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As I am going through a very tough time trying to support my autistic teen (diagnosed late with little to no services available and particularly having gone through lockdowns at a crucial developmental stage which has severely impacted any social interactions), I would like to hear from those of you with a late diagnosis/realisation, what it is you would have wanted your parents to know, say and/or do? How could they have been more supportive? | |||
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"It's been very interesting reading the thread on adults who found out late that they are on the spectrum. Thank you all for your insights .
As I am going through a very tough time trying to support my autistic teen (diagnosed late with little to no services available and particularly having gone through lockdowns at a crucial developmental stage which has severely impacted any social interactions), I would like to hear from those of you with a late diagnosis/realisation, what it is you would have wanted your parents to know, say and/or do? How could they have been more supportive?"My brother is autistic, and my closest fwb has two autistic teenagers that she home schools. Feel free to reach out is you like to discuss more x | |||
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"The biggest part that helped my brother was imitation. If he made a funny noise, we would copy. If he hid and coloured, so would we. He I'm a to realise that he wasn't alone and has a friend. Also the understanding how overwhelming environments are with noises, smells, sights etc. Sometimes limiting some of these senses so they can focus on just a little is helpful " My daughter is high functioning. Unfortunately she has no friends - the transition from primary to secondary school during lockdowns saw to that  . I'm not sure how much damage/trauma was caused by "losing" the one friend she had who attends a different school - meaning the friendship would probably have dissolved naturally over time (I would think anyway).
She "refuses" (social anxiety is a serious concern) to engage with people outside the family and even within it, it is very limited.
We are aware of her sensory needs. Leaving the house outside of her routine, she has to be well prepared for so she can psyche herself up and is always in a limited time capacity. Noise is blocked through earphones, sight partially through wearing a hoodie with the hood pulled over the head.
Thank you for your feedback. It must have been tough growing up with a neuro divergent sibling. I know her brother struggles... | |||
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"People gaslight us all the time. Avoid that, I don't know of a single neurodiverse person that doesnt resent that. If they have meltdowns, make sure they know thst they won't be in trouble for having a meltdown. Learn what are their sensory triggers but also their sensory pleasures." I had to Google that  . I don't think anyone likes to be gaslighted! I never question my children's sanity. Since her diagnosis I have done whatever I possibly could to try and be as supportive as possible, while finding out bit by bit what her needs and capabilities are as well as her limitations.
Tantrums/meltdowns are thankfully not an issue. I would be fairly laid back now and if I have any inkling that she's having a reaction to a sensory overload or is in a state of anxiety, I would never punish that. I'm not really a punisher anyway, more of a go-think-about-it kinda parent when things go wrong - not only for the children but myself too  .
I know her sensory pleasures!!!   | |||
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"My now 18 year old is still waiting for an assessment. Females present differently to males, and it's often misdiagnosed as anxiety/depression. I queried autism with her school, with CAMHS, with Families First, and I was dismissed. Only when she got to college and I spoke to the ALNCo that I, and she, were taken seriously. My biggest piece of advice, don't give up. If you think your child is neurodivergent and you want support, keep pushing and pushing. I'm happy to share my experiences with other parents - we, too, have been through some very dark times, but our relationship now is stronger than ever. PM's welcome on this topic. LadyO" I'm sorry to hear that you were never taken seriously by those you sought out to help. Until we finally got a diagnosis I was always questioning myself as a parent because family and friends all had children where things just looked so much more "normal", easier, happier... Occasionally I bump into parents of healthy, neurotypical children and by God, I sometimes think I'd love to have their worries  (I actually don't, I'm quite content living my worries but I so feel for my very unhappy daughter!!! It breaks my heart to see her suffer).
We've pushed for supports but with Covid, the waiting list for anything has only come through recently and even at that, there are no services. A lot of what we've done, we've done privately.
We'll see if a recent massive deterioration in her situation has an impact on those services but I'm not holding my breath 
I hope your daughter is happy where she's at and getting the supports she needs to help her through college. | |||
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"It's been very interesting reading the thread on adults who found out late that they are on the spectrum. Thank you all for your insights .
As I am going through a very tough time trying to support my autistic teen (diagnosed late with little to no services available and particularly having gone through lockdowns at a crucial developmental stage which has severely impacted any social interactions), I would like to hear from those of you with a late diagnosis/realisation, what it is you would have wanted your parents to know, say and/or do? How could they have been more supportive?"Your post is by far the best I've seen on here EVER!! What a mom you are!! And how lucky your child is Much love sent both your ways xxx | |||
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"People gaslight us all the time. Avoid that, I don't know of a single neurodiverse person that doesnt resent that. If they have meltdowns, make sure they know thst they won't be in trouble for having a meltdown. Learn what are their sensory triggers but also their sensory pleasures. I had to Google that . I don't think anyone likes to be gaslighted! I never question my children's sanity. Since her diagnosis I have done whatever I possibly could to try and be as supportive as possible, while finding out bit by bit what her needs and capabilities are as well as her limitations.
Tantrums/meltdowns are thankfully not an issue. I would be fairly laid back now and if I have any inkling that she's having a reaction to a sensory overload or is in a state of anxiety, I would never punish that. I'm not really a punisher anyway, more of a go-think-about-it kinda parent when things go wrong - not only for the children but myself too .
I know her sensory pleasures!!! "You sound like you are doing an awesone job
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"The biggest part that helped my brother was imitation. If he made a funny noise, we would copy. If he hid and coloured, so would we. He I'm a to realise that he wasn't alone and has a friend. Also the understanding how overwhelming environments are with noises, smells, sights etc. Sometimes limiting some of these senses so they can focus on just a little is helpful My daughter is high functioning. Unfortunately she has no friends - the transition from primary to secondary school during lockdowns saw to that . I'm not sure how much damage/trauma was caused by "losing" the one friend she had who attends a different school - meaning the friendship would probably have dissolved naturally over time (I would think anyway).
She "refuses" (social anxiety is a serious concern) to engage with people outside the family and even within it, it is very limited.
We are aware of her sensory needs. Leaving the house outside of her routine, she has to be well prepared for so she can psyche herself up and is always in a limited time capacity. Noise is blocked through earphones, sight partially through wearing a hoodie with the hood pulled over the head.
Thank you for your feedback. It must have been tough growing up with a neuro divergent sibling. I know her brother struggles..."Personally I don't find terms like high functioning particularly helpful. It's a spectrum and we all sit on there in different places. I I personally feel the term high functioning suggests that Autism isn't limiting when it is. Bit I'd stress that's just my opinion, how we describe our autism is down to us to a large extent | |||
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"The biggest part that helped my brother was imitation. If he made a funny noise, we would copy. If he hid and coloured, so would we. He I'm a to realise that he wasn't alone and has a friend. Also the understanding how overwhelming environments are with noises, smells, sights etc. Sometimes limiting some of these senses so they can focus on just a little is helpful My daughter is high functioning. Unfortunately she has no friends - the transition from primary to secondary school during lockdowns saw to that . I'm not sure how much damage/trauma was caused by "losing" the one friend she had who attends a different school - meaning the friendship would probably have dissolved naturally over time (I would think anyway).
She "refuses" (social anxiety is a serious concern) to engage with people outside the family and even within it, it is very limited.
We are aware of her sensory needs. Leaving the house outside of her routine, she has to be well prepared for so she can psyche herself up and is always in a limited time capacity. Noise is blocked through earphones, sight partially through wearing a hoodie with the hood pulled over the head.
Thank you for your feedback. It must have been tough growing up with a neuro divergent sibling. I know her brother struggles...
Personally I don't find terms like high functioning particularly helpful.
It's a spectrum and we all sit on there in different places. I I personally feel the term high functioning suggests that Autism isn't limiting when it is.
Bit I'd stress that's just my opinion, how we describe our autism is down to us to a large extent"Yes. "high functioning" often means "more pleasing to non autistic people", even though keeping up being pleasing can be detrimental to us psychologically and even physically. | |||
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"I was very lucky in a way that my son was picked up on so quickly, and that was purely through a change in our circumstances. In our old town his speech issues were tested and came back as normal. He had started at School (infants ) part time and I was brought into the School and told he needed to attend on a more full time basis as he was disruptive and behind the other kids for his age. We changed towns and the new School that he attended picked up on him being different straight away. They monitored him for a bit and then brought in a Child Psychologist who basically moved heaven and earth to get him referred to SALT and saw straight away that he was autistic and supported me and the School for us to get put before a panel for a formal diagnosis - Autistic Spectrum Disorder. The process was long, it basically went from age 3/4 through to the diagnosis being confirmed in writing in August 2021. The SALT sessions were a game changer for my son. His speech can be garbled and very fast and it was near on impossible for anyone but myself and his brother to understand him, but the sessions improved his speech SO much. It gave him a voice, he could be understood and he worked so, so hard at those sessions. He cannot sit still for more than 15 minutes without needing a break so the effort to attend 45 minute sessions was massive. I was so proud of him and he was eventually discharged. He still has his unclear moments, but only when upset or tired. I can’t imagine where we would be without the School stepping up and assisting me and him and getting the help he needed at this age. Perseverance is key. It’s hard going, when you feel that nobody is listening to you, and you have to fight your child’s corner constantly, which can feel overwhelming and lonely at times, but when you do get that support in place it’s a relief. The School has been brilliant and have adapted their way of teaching him to suit his needs, he has headphones to cancel out noise and is given “time out” breaks to allow him to get up and wander and my son is confident in his quirks. I’m a bit concerned as to what Comprehensive will bring in September, but will deal with that and any challenges when it happens. How different it could have been if we hadn’t moved area though. " Delighted to hear that your experience to date has been positive. I do hope that the transition to Comprehensive goes smoothly too  | |||
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"I am surprised that in this site I had the chance to read a sweet ,sincere message like yours .... I have worked for years with people in the spectrum and I assure you that I have long lasted friendships ....again thanks for this post " Thank you for the compliment and input. I hope you find your work fulfilling. | |||
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"It's been very interesting reading the thread on adults who found out late that they are on the spectrum. Thank you all for your insights .
As I am going through a very tough time trying to support my autistic teen (diagnosed late with little to no services available and particularly having gone through lockdowns at a crucial developmental stage which has severely impacted any social interactions), I would like to hear from those of you with a late diagnosis/realisation, what it is you would have wanted your parents to know, say and/or do? How could they have been more supportive?
Your post is by far the best I've seen on here EVER!!
What a mom you are!!
And how lucky your child is
Much love sent both your ways xxx "Thank you | |||
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"The biggest part that helped my brother was imitation. If he made a funny noise, we would copy. If he hid and coloured, so would we. He I'm a to realise that he wasn't alone and has a friend. Also the understanding how overwhelming environments are with noises, smells, sights etc. Sometimes limiting some of these senses so they can focus on just a little is helpful My daughter is high functioning. Unfortunately she has no friends - the transition from primary to secondary school during lockdowns saw to that . I'm not sure how much damage/trauma was caused by "losing" the one friend she had who attends a different school - meaning the friendship would probably have dissolved naturally over time (I would think anyway).
She "refuses" (social anxiety is a serious concern) to engage with people outside the family and even within it, it is very limited.
We are aware of her sensory needs. Leaving the house outside of her routine, she has to be well prepared for so she can psyche herself up and is always in a limited time capacity. Noise is blocked through earphones, sight partially through wearing a hoodie with the hood pulled over the head.
Thank you for your feedback. It must have been tough growing up with a neuro divergent sibling. I know her brother struggles..."Tough, but it forms your character and I think I'm a lot more tolerant of people because of this. | |||
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" Personally I don't find terms like high functioning particularly helpful. It's a spectrum and we all sit on there in different places. I I personally feel the term high functioning suggests that Autism isn't limiting when it is. Bit I'd stress that's just my opinion, how we describe our autism is down to us to a large extent Yes. "high functioning" often means "more pleasing to non autistic people", even though keeping up being pleasing can be detrimental to us psychologically and even physically." It was the term used by the diagnosing psychologist at the time. I didn't realise that it might be a term which would offend and certainly didn't mean to! I will adjust my language. Thank you for letting me know that it is a term which does cause offence. I have sat in many meetings, educational and recreational with professional facilitators to help and support parents of neuro diverse children. Language around these different needs in new circles is often the first topic discussed as nobody wants to offend and many wish to use different terms around their neuro diverse children. You'd be surprised to hear the different opinions, some prefer to use the diagnosis to talk about their children, some use neuro diverse, some prefer different needs, others special needs and I was most surprised at one particular lady with 4 neuro diverse children who insisted on the term disabled because she felt that her children were that. As for high functioning meaning "more pleasing to non-autistic people", I'm really not sure what to do with that comment - I meant no offense, apologies if I did. Believe me, I'm living the pain my daughter goes through on a daily basis - no amount of packaging a diagnosis in pretty language is going to take that. I doubt anyone wishes to cause psychological or physical harm regardless of a condition being present - I certainly don't. My assumption at the time was that if there is "high functioning", as used by the psychologist, then there'd be "low functioning" - autism being a spectrum. I am now well aware that autism is so much more than "just" a spectrum, with each individual being so different in how the condition presents. | |||
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"my 14 year old is asd and adhd im no expert but avaliable to chat " Thank you kindly | |||
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"It is the things that make us different that makes us all so special " I agree wholeheartedly .
And I am hoping that my son will be a better person for it too - as per your previous comment. | |||
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"I was diagnosed at 36 years old, having struggled and tottered through life up to this point. Both my kids (now 17 and 19) are also autistic, and it was picked up much younger for them, albeit not without a fight to get it recognised. My parents did eventually come to terms with my diagnosis, but in the interim period, there was a huge attitude of “Well, you’ve coped alright up to now, so why does a label make it any different?” For me personally, it’s not been a label - it’s been a key to understanding myself, to figuring out how to thrive rather than just coping, and to help myself to be much calmer and more gentle on myself. From reading the answers on this thread and your posts in response, it sounds like you are doing an amazing job already, but I’m always happy to share more of my experiences, both as a late diagnosed female and as a mother of autistic teens. Do feel free to reach out in a message if you like. Dru xx " Thank you. And maybe that's where I need to focus more energy - rather than just giving her the tools to cope, but to help to understand herself better. | |||
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"I’m so impressed by this thread. People helping each other, or at least trying to, is just wonderful.. I’m not saying this to get any particular feedback.. I’m just saying it because I mean it If an older experienced guy can help with any of this please do let me know " Thank you | |||
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"It is the things that make us different that makes us all so special I agree wholeheartedly .
And I am hoping that my son will be a better person for it too - as per your previous comment."I don't doubt he will be. If I had a choice now, even though I've had my head bashed more than not. I would happily keep him the same as he is now. I'm always learning from him, as he really doesn't care how the world sees him. He's living the moment | |||
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"It's been very interesting reading the thread on adults who found out late that they are on the spectrum. Thank you all for your insights .
As I am going through a very tough time trying to support my autistic teen (diagnosed late with little to no services available and particularly having gone through lockdowns at a crucial developmental stage which has severely impacted any social interactions), I would like to hear from those of you with a late diagnosis/realisation, what it is you would have wanted your parents to know, say and/or do? How could they have been more supportive?"Mr here. I was diagnosed in 2019. I also apparently have a higher than average IQ. The less said about my biological father (ex-parent) the better. Nothing he could do would have made a difference. My mum could have treated my like an adult. I’ve always said (ever since a was a child) that I was like an old man trapped in a younger body. People always treated me like a child (because I was one) when I generally was more intelligent than they were. They assumed because of my age that I wouldn’t understand and I would find things too complicated. Bear in mind that at around 7 years old I would be taking apart brand new tech (VCRs, HiFis, computers, etc.) much to the horror of everyone - only to then put it back together to demonstrate that it still worked and I actually new what I was doing. Recognise, nurture, and praise the exceptional qualities your teen has. They’ll go further and feel more valued. (I mean, this really should go for any parent!) For me it would have meant feeling better about myself, rather than constantly being either ignored or worse. | |||
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"My brother was diagnosed at 4. I love him so much. He's 22 now, mum's 64 and I do worry about the future for him as he'll never be able to lead a life like we do and mum won't be around forever . He can't read or write but he's funny. Myself and my sisters are a lot older than him, bless him he didn't realise we were his sisters for years. "And I think that you've just put into words my biggest fear! We as parents won't be around forever and I have no idea at this point whether she will be able to live independently and earn a living. It sounds like your brother is lucky to have you and a supportive family | |||
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" Personally I don't find terms like high functioning particularly helpful. It's a spectrum and we all sit on there in different places. I I personally feel the term high functioning suggests that Autism isn't limiting when it is. Bit I'd stress that's just my opinion, how we describe our autism is down to us to a large extent Yes. "high functioning" often means "more pleasing to non autistic people", even though keeping up being pleasing can be detrimental to us psychologically and even physically. It was the term used by the diagnosing psychologist at the time. I didn't realise that it might be a term which would offend and certainly didn't mean to! I will adjust my language. Thank you for letting me know that it is a term which does cause offence. I have sat in many meetings, educational and recreational with professional facilitators to help and support parents of neuro diverse children. Language around these different needs in new circles is often the first topic discussed as nobody wants to offend and many wish to use different terms around their neuro diverse children. You'd be surprised to hear the different opinions, some prefer to use the diagnosis to talk about their children, some use neuro diverse, some prefer different needs, others special needs and I was most surprised at one particular lady with 4 neuro diverse children who insisted on the term disabled because she felt that her children were that. As for high functioning meaning "more pleasing to non-autistic people", I'm really not sure what to do with that comment - I meant no offense, apologies if I did. Believe me, I'm living the pain my daughter goes through on a daily basis - no amount of packaging a diagnosis in pretty language is going to take that. I doubt anyone wishes to cause psychological or physical harm regardless of a condition being present - I certainly don't. My assumption at the time was that if there is "high functioning", as used by the psychologist, then there'd be "low functioning" - autism being a spectrum. I am now well aware that autism is so much more than "just" a spectrum, with each individual being so different in how the condition presents." No. Don't worry, I'm not offended by you. The system troubles me, but those who intersect with it are just doing the best we can. There is some sense in seeing autism as an ability to function within society, degrees of disability. But I personally find it disempowering. It becomes not about my suffering but about how convenient or inconvenient I can be to people around me - even if I tear myself into shreds to be convenient. I was simply diagnosed - age 33 - as autistic. In some ways that's not helpful, because it is a huge category of people with very diverse needs. But I find it better, because it's no longer about my ability to perform for neurotypicals. You know? | |||
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" Personally I don't find terms like high functioning particularly helpful. It's a spectrum and we all sit on there in different places. I I personally feel the term high functioning suggests that Autism isn't limiting when it is. Bit I'd stress that's just my opinion, how we describe our autism is down to us to a large extent Yes. "high functioning" often means "more pleasing to non autistic people", even though keeping up being pleasing can be detrimental to us psychologically and even physically. It was the term used by the diagnosing psychologist at the time. I didn't realise that it might be a term which would offend and certainly didn't mean to! I will adjust my language. Thank you for letting me know that it is a term which does cause offence. I have sat in many meetings, educational and recreational with professional facilitators to help and support parents of neuro diverse children. Language around these different needs in new circles is often the first topic discussed as nobody wants to offend and many wish to use different terms around their neuro diverse children. You'd be surprised to hear the different opinions, some prefer to use the diagnosis to talk about their children, some use neuro diverse, some prefer different needs, others special needs and I was most surprised at one particular lady with 4 neuro diverse children who insisted on the term disabled because she felt that her children were that. As for high functioning meaning "more pleasing to non-autistic people", I'm really not sure what to do with that comment - I meant no offense, apologies if I did. Believe me, I'm living the pain my daughter goes through on a daily basis - no amount of packaging a diagnosis in pretty language is going to take that. I doubt anyone wishes to cause psychological or physical harm regardless of a condition being present - I certainly don't. My assumption at the time was that if there is "high functioning", as used by the psychologist, then there'd be "low functioning" - autism being a spectrum. I am now well aware that autism is so much more than "just" a spectrum, with each individual being so different in how the condition presents." Please dint apologise, there was no offence taken or more importantly intended 
I very much believe we should have the autonomy to describe ourselves as we see fit, and as you say, there are numerous descriptions and non are invalid. I consider myself disabled, as much as anything because i find it means asking for support is much easier.
It is a spectrum but it's not a straight line with high and low at either end, because all our strengths and weaknesses are different.
My own issue with the term 'High functioning' is, as in your daughter's case a label applied by a neurotypical doctor. Reading of your daughter's struggles genuinely breaks my heart, it reminds me of young me (only I didn't know why I was like that) but the benchmark for being described as high functioning seems incredibly low, and I do feel it unintentionally invalidates our struggles.
But non of this is a criticism of your use of the term. | |||
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"It's been very interesting reading the thread on adults who found out late that they are on the spectrum. Thank you all for your insights .
As I am going through a very tough time trying to support my autistic teen (diagnosed late with little to no services available and particularly having gone through lockdowns at a crucial developmental stage which has severely impacted any social interactions), I would like to hear from those of you with a late diagnosis/realisation, what it is you would have wanted your parents to know, say and/or do? How could they have been more supportive?
Mr here. I was diagnosed in 2019. I also apparently have a higher than average IQ.
The less said about my biological father (ex-parent) the better. Nothing he could do would have made a difference.
My mum could have treated my like an adult. I’ve always said (ever since a was a child) that I was like an old man trapped in a younger body.
People always treated me like a child (because I was one) when I generally was more intelligent than they were. They assumed because of my age that I wouldn’t understand and I would find things too complicated. Bear in mind that at around 7 years old I would be taking apart brand new tech (VCRs, HiFis, computers, etc.) much to the horror of everyone - only to then put it back together to demonstrate that it still worked and I actually new what I was doing.
Recognise, nurture, and praise the exceptional qualities your teen has. They’ll go further and feel more valued. (I mean, this really should go for any parent!) For me it would have meant feeling better about myself, rather than constantly being either ignored or worse."That definitely should go for every parent!!! And is certainly one I'll need to remind myself of more often - to look out for the positives and the capabilities and accomplishments, no matter how small rather than the limitations. Your parents sound like they underestimated your capabilities time and time again which must have been very demoralising. Thank you | |||
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" Personally I don't find terms like high functioning particularly helpful. It's a spectrum and we all sit on there in different places. I I personally feel the term high functioning suggests that Autism isn't limiting when it is. Bit I'd stress that's just my opinion, how we describe our autism is down to us to a large extent Yes. "high functioning" often means "more pleasing to non autistic people", even though keeping up being pleasing can be detrimental to us psychologically and even physically. It was the term used by the diagnosing psychologist at the time. I didn't realise that it might be a term which would offend and certainly didn't mean to! I will adjust my language. Thank you for letting me know that it is a term which does cause offence. I have sat in many meetings, educational and recreational with professional facilitators to help and support parents of neuro diverse children. Language around these different needs in new circles is often the first topic discussed as nobody wants to offend and many wish to use different terms around their neuro diverse children. You'd be surprised to hear the different opinions, some prefer to use the diagnosis to talk about their children, some use neuro diverse, some prefer different needs, others special needs and I was most surprised at one particular lady with 4 neuro diverse children who insisted on the term disabled because she felt that her children were that. As for high functioning meaning "more pleasing to non-autistic people", I'm really not sure what to do with that comment - I meant no offense, apologies if I did. Believe me, I'm living the pain my daughter goes through on a daily basis - no amount of packaging a diagnosis in pretty language is going to take that. I doubt anyone wishes to cause psychological or physical harm regardless of a condition being present - I certainly don't. My assumption at the time was that if there is "high functioning", as used by the psychologist, then there'd be "low functioning" - autism being a spectrum. I am now well aware that autism is so much more than "just" a spectrum, with each individual being so different in how the condition presents. No. Don't worry, I'm not offended by you. The system troubles me, but those who intersect with it are just doing the best we can. There is some sense in seeing autism as an ability to function within society, degrees of disability. But I personally find it disempowering. It becomes not about my suffering but about how convenient or inconvenient I can be to people around me - even if I tear myself into shreds to be convenient. I was simply diagnosed - age 33 - as autistic. In some ways that's not helpful, because it is a huge category of people with very diverse needs. But I find it better, because it's no longer about my ability to perform for neurotypicals. You know?" It is a huge category!!! So many different aspects that play into it... and that's why it's so difficult to grasp and make sense of - for both neuro diverse and neuro typicals I would think. And I do think that I understand what you mean - the performing monkey to slot into a society which is by and large created by neurotypicals for neurotypicals? At least, that's what I'm thinking you're trying to get at. | |||
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" Personally I don't find terms like high functioning particularly helpful. It's a spectrum and we all sit on there in different places. I I personally feel the term high functioning suggests that Autism isn't limiting when it is. Bit I'd stress that's just my opinion, how we describe our autism is down to us to a large extent Yes. "high functioning" often means "more pleasing to non autistic people", even though keeping up being pleasing can be detrimental to us psychologically and even physically. It was the term used by the diagnosing psychologist at the time. I didn't realise that it might be a term which would offend and certainly didn't mean to! I will adjust my language. Thank you for letting me know that it is a term which does cause offence. I have sat in many meetings, educational and recreational with professional facilitators to help and support parents of neuro diverse children. Language around these different needs in new circles is often the first topic discussed as nobody wants to offend and many wish to use different terms around their neuro diverse children. You'd be surprised to hear the different opinions, some prefer to use the diagnosis to talk about their children, some use neuro diverse, some prefer different needs, others special needs and I was most surprised at one particular lady with 4 neuro diverse children who insisted on the term disabled because she felt that her children were that. As for high functioning meaning "more pleasing to non-autistic people", I'm really not sure what to do with that comment - I meant no offense, apologies if I did. Believe me, I'm living the pain my daughter goes through on a daily basis - no amount of packaging a diagnosis in pretty language is going to take that. I doubt anyone wishes to cause psychological or physical harm regardless of a condition being present - I certainly don't. My assumption at the time was that if there is "high functioning", as used by the psychologist, then there'd be "low functioning" - autism being a spectrum. I am now well aware that autism is so much more than "just" a spectrum, with each individual being so different in how the condition presents. Please dint apologise, there was no offence taken or more importantly intended
I very much believe we should have the autonomy to describe ourselves as we see fit, and as you say, there are numerous descriptions and non are invalid. I consider myself disabled, as much as anything because i find it means asking for support is much easier.
It is a spectrum but it's not a straight line with high and low at either end, because all our strengths and weaknesses are different.
My own issue with the term 'High functioning' is, as in your daughter's case a label applied by a neurotypical doctor. Reading of your daughter's struggles genuinely breaks my heart, it reminds me of young me (only I didn't know why I was like that) but the benchmark for being described as high functioning seems incredibly low, and I do feel it unintentionally invalidates our struggles.
But non of this is a criticism of your use of the term. "And it really is a completely inappropriate term to describe the condition considering her needs. I do appreciate your input. Thank you
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"Check out Women and Girls with Autism Spectrum Disorder - Sarah Hendrickx - if you can get your hands on it. It's often an uphill battle for girls and women (less so now) because there's a fuckton of blue-washing in autism. (That is, that only male experiences matter. And I'm not saying they don't! But not to the exclusion of girls and women) I probably would have been diagnosed (with Asperger's) 20+ years earlier if I had been a boy. " I will try to find a copy of that. Thank you for the advice. | |||
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"Just posting this in case you or anyone really can get any use out of it When I was struggling with my ptsd and docs ect weren’t helping I fell down a rabbit hole online looking for answers and discovered self study, I started studying ptsd myself and using what worked for me personally. Anyway I also found MITocw is free for anyone to use and they had loads of MH courses. It’s far from any cure but could just give some answers maybe Not many seem to know it’s there and it’s handy so just if anyone can get any use from it is all "Any and all advice appreciated | |||
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" Personally I don't find terms like high functioning particularly helpful. It's a spectrum and we all sit on there in different places. I I personally feel the term high functioning suggests that Autism isn't limiting when it is. Bit I'd stress that's just my opinion, how we describe our autism is down to us to a large extent Yes. "high functioning" often means "more pleasing to non autistic people", even though keeping up being pleasing can be detrimental to us psychologically and even physically. It was the term used by the diagnosing psychologist at the time. I didn't realise that it might be a term which would offend and certainly didn't mean to! I will adjust my language. Thank you for letting me know that it is a term which does cause offence. I have sat in many meetings, educational and recreational with professional facilitators to help and support parents of neuro diverse children. Language around these different needs in new circles is often the first topic discussed as nobody wants to offend and many wish to use different terms around their neuro diverse children. You'd be surprised to hear the different opinions, some prefer to use the diagnosis to talk about their children, some use neuro diverse, some prefer different needs, others special needs and I was most surprised at one particular lady with 4 neuro diverse children who insisted on the term disabled because she felt that her children were that. As for high functioning meaning "more pleasing to non-autistic people", I'm really not sure what to do with that comment - I meant no offense, apologies if I did. Believe me, I'm living the pain my daughter goes through on a daily basis - no amount of packaging a diagnosis in pretty language is going to take that. I doubt anyone wishes to cause psychological or physical harm regardless of a condition being present - I certainly don't. My assumption at the time was that if there is "high functioning", as used by the psychologist, then there'd be "low functioning" - autism being a spectrum. I am now well aware that autism is so much more than "just" a spectrum, with each individual being so different in how the condition presents. No. Don't worry, I'm not offended by you. The system troubles me, but those who intersect with it are just doing the best we can. There is some sense in seeing autism as an ability to function within society, degrees of disability. But I personally find it disempowering. It becomes not about my suffering but about how convenient or inconvenient I can be to people around me - even if I tear myself into shreds to be convenient. I was simply diagnosed - age 33 - as autistic. In some ways that's not helpful, because it is a huge category of people with very diverse needs. But I find it better, because it's no longer about my ability to perform for neurotypicals. You know? It is a huge category!!! So many different aspects that play into it... and that's why it's so difficult to grasp and make sense of - for both neuro diverse and neuro typicals I would think. And I do think that I understand what you mean - the performing monkey to slot into a society which is by and large created by neurotypicals for neurotypicals? At least, that's what I'm thinking you're trying to get at." Yes, definitely. Like, I know how to play some of the social niceties games and how to be less blunt. I know how to be superficial and shut the fuck up about my passions. I know (to a point) about body language and social cues and all of that stuff. I know that I overreact to some stimuli, underreact to others, and I need to mitigate or explain or both. But it's exhausting, my god is it exhausting. It's just an additional burden to add to my day. I'd get home from school every day and collapse, melt down, because I had to hold all that in on top of everything else. But because I wasn't disruptive, because I'm verbal*, because I'm continent, etc - I'm high functioning, so, who cares? (And people who are low functioning - they often can't talk, they struggle with toileting, etc, so, you know, fuck 'em. It often feels like. And they have so much to offer if given the tools) * I had significant developmental delay such that I might have been given the diagnosis of low functioning autism, had it come to it (Asperger's is a better fit for my circumstances - in the UK it's all been collapsed into autism). Which in some ways shows how stupid all of this stuff is. I suppose I did flunk my PhD? | |||
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"I wish I could offer you advice on what more to do. I would have killed (not... literally) for the kind of support you're giving your daughter. It would have saved me so much trauma and wounds I'll carry with me for the rest of my life. I'm sure there's more that can be done - isn't there always - but I'll just say, from the deepest most wounded inner child within me... thank you. I want better for your daughter than I had." That's put tears in my eyes. There's so much trauma and pain in the world. I hope you find your path to healing. Thank you | |||
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" Personally I don't find terms like high functioning particularly helpful. It's a spectrum and we all sit on there in different places. I I personally feel the term high functioning suggests that Autism isn't limiting when it is. Bit I'd stress that's just my opinion, how we describe our autism is down to us to a large extent Yes. "high functioning" often means "more pleasing to non autistic people", even though keeping up being pleasing can be detrimental to us psychologically and even physically. It was the term used by the diagnosing psychologist at the time. I didn't realise that it might be a term which would offend and certainly didn't mean to! I will adjust my language. Thank you for letting me know that it is a term which does cause offence. I have sat in many meetings, educational and recreational with professional facilitators to help and support parents of neuro diverse children. Language around these different needs in new circles is often the first topic discussed as nobody wants to offend and many wish to use different terms around their neuro diverse children. You'd be surprised to hear the different opinions, some prefer to use the diagnosis to talk about their children, some use neuro diverse, some prefer different needs, others special needs and I was most surprised at one particular lady with 4 neuro diverse children who insisted on the term disabled because she felt that her children were that. As for high functioning meaning "more pleasing to non-autistic people", I'm really not sure what to do with that comment - I meant no offense, apologies if I did. Believe me, I'm living the pain my daughter goes through on a daily basis - no amount of packaging a diagnosis in pretty language is going to take that. I doubt anyone wishes to cause psychological or physical harm regardless of a condition being present - I certainly don't. My assumption at the time was that if there is "high functioning", as used by the psychologist, then there'd be "low functioning" - autism being a spectrum. I am now well aware that autism is so much more than "just" a spectrum, with each individual being so different in how the condition presents. Please dint apologise, there was no offence taken or more importantly intended
I very much believe we should have the autonomy to describe ourselves as we see fit, and as you say, there are numerous descriptions and non are invalid. I consider myself disabled, as much as anything because i find it means asking for support is much easier.
It is a spectrum but it's not a straight line with high and low at either end, because all our strengths and weaknesses are different.
My own issue with the term 'High functioning' is, as in your daughter's case a label applied by a neurotypical doctor. Reading of your daughter's struggles genuinely breaks my heart, it reminds me of young me (only I didn't know why I was like that) but the benchmark for being described as high functioning seems incredibly low, and I do feel it unintentionally invalidates our struggles.
But non of this is a criticism of your use of the term.
And it really is a completely inappropriate term to describe the condition considering her needs.
I do appreciate your input. Thank you
"Yes, and i think this is why i get annoyed by the term, everything you've described, about yiyr daughter, non of it is high functioning is it? And (sorry I'm off on one now) I cant think of another disability which gets described in such a way, certainly physical ones don't. But can I also echo Inaswingdress' beautiful comments a few posts above thos one | |||
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"Two half thoughts - not strictly autism related, but there's a lot of overlap between autism and anxiety, and you've mentioned anxiety. Look into stuff on the vagal nerve - no need to spend any money, I mean DIY things like this video. https://www.youtube.com/watch?v=LnV3Q2xIb1U It helps promote (in conjunction with more conventional methods - I'm not saying ditch the doctors, I never would) a feeling of calm in the body in an indirect way when more direct methods don't work. I also find that physical activity helps keep me calmer and gives me the mental space to handle all of the BS going on. School sports was pretty gross for me because undiagnosed autism and I'm not desperately coordinated. But if she can find her thing - again, there's a sense of inner calm when you're a bit fitter and you have some muscle tone. For me it's strength training (before the pandemic it was weight lifting, I now do bodyweight work in my living room with minimal tools). For me, a solo task removes pressure, having to be social, embarrassment etc. Obviously don't force a thing on her, that won't work (not that I think you would), but there may be a thing that improves her relationship with her body and promotes that feeling of safety within her. I think feeling safe in your own skin can be something that autistic people can lack."
Similarly, she will find a special interest at some point, when she does indulge her let her explore it and savour it and enthuse about it. | |||
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"Two half thoughts - not strictly autism related, but there's a lot of overlap between autism and anxiety, and you've mentioned anxiety. Look into stuff on the vagal nerve - no need to spend any money, I mean DIY things like this video. https://www.youtube.com/watch?v=LnV3Q2xIb1U It helps promote (in conjunction with more conventional methods - I'm not saying ditch the doctors, I never would) a feeling of calm in the body in an indirect way when more direct methods don't work. I also find that physical activity helps keep me calmer and gives me the mental space to handle all of the BS going on. School sports was pretty gross for me because undiagnosed autism and I'm not desperately coordinated. But if she can find her thing - again, there's a sense of inner calm when you're a bit fitter and you have some muscle tone. For me it's strength training (before the pandemic it was weight lifting, I now do bodyweight work in my living room with minimal tools). For me, a solo task removes pressure, having to be social, embarrassment etc. Obviously don't force a thing on her, that won't work (not that I think you would), but there may be a thing that improves her relationship with her body and promotes that feeling of safety within her. I think feeling safe in your own skin can be something that autistic people can lack.
Similarly, she will find a special interest at some point, when she does indulge her let her explore it and savour it and enthuse about it. "Yes 
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" Thank you. And maybe that's where I need to focus more energy - rather than just giving her the tools to cope, but to help to understand herself better." Yes, I absolutely agree - the tools are so much more productive when you understand why as well as how. Asperger’s is an outdated term now (everything is classed as autism without the specific separate categorisation), but none the less, the book Aspergirls by Rudy Simone helped me understand a massive amount about myself. Reading it, I felt understood and heard for the first time. I thoroughly recommended it. Dru xx | |||
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"This is interesting and is something I can relate too. A close friend of mine was diagnosed late as an adult so I have seen first hand how difficult it is to navigate through society with little help available. They wish to keep their diagnosis to themselves for fear of being belittled. In my experience I have found autistic adults clever on the contrary but when it comes to socialising some avoid it at all costs. This saddens me because this inevitably leaves them isolated. I think it’s fear and literally not knowing how to engage with other strangers that puts them off. I can understand that to a point but there must be a way. If anyone has advice that would be appreciated. How do I encourage them to socialise alone as I can’t be there all the time! Should they mention their autism? I think so but it’s an individual choice. Really interested to hear especially from adults with late diagnosis. Cheers" Many of us learn early that socialising is difficult and we'll be rejected no hard we try to fit in. There must be a way and so many of us do keep trying, but honestly, isolation is often preferable to walking on eggshells, twisting ourselves into something we're not, and continued denigration that has echoes from the scars of childhood. There's a not small subset of neurotypicals who didn't outgrow the schoolyard bullying, and I would pay good money to never deal with them ever again. | |||
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"This is interesting and is something I can relate too. A close friend of mine was diagnosed late as an adult so I have seen first hand how difficult it is to navigate through society with little help available. They wish to keep their diagnosis to themselves for fear of being belittled. In my experience I have found autistic adults clever on the contrary but when it comes to socialising some avoid it at all costs. This saddens me because this inevitably leaves them isolated. I think it’s fear and literally not knowing how to engage with other strangers that puts them off. I can understand that to a point but there must be a way. If anyone has advice that would be appreciated. How do I encourage them to socialise alone as I can’t be there all the time! Should they mention their autism? I think so but it’s an individual choice. Really interested to hear especially from adults with late diagnosis. Cheers Many of us learn early that socialising is difficult and we'll be rejected no hard we try to fit in. There must be a way and so many of us do keep trying, but honestly, isolation is often preferable to walking on eggshells, twisting ourselves into something we're not, and continued denigration that has echoes from the scars of childhood. There's a not small subset of neurotypicals who didn't outgrow the schoolyard bullying, and I would pay good money to never deal with them ever again." Socialising is something I cannot do. I can work around large groups no issues (I work for the railway sector), but when it comes to pubs clubs etc they send me into full meltdown. Which is not something anyone wants to witness. | |||
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"This is interesting and is something I can relate too. A close friend of mine was diagnosed late as an adult so I have seen first hand how difficult it is to navigate through society with little help available. They wish to keep their diagnosis to themselves for fear of being belittled. In my experience I have found autistic adults clever on the contrary but when it comes to socialising some avoid it at all costs. This saddens me because this inevitably leaves them isolated. I think it’s fear and literally not knowing how to engage with other strangers that puts them off. I can understand that to a point but there must be a way. If anyone has advice that would be appreciated. How do I encourage them to socialise alone as I can’t be there all the time! Should they mention their autism? I think so but it’s an individual choice. Really interested to hear especially from adults with late diagnosis. Cheers Many of us learn early that socialising is difficult and we'll be rejected no hard we try to fit in. There must be a way and so many of us do keep trying, but honestly, isolation is often preferable to walking on eggshells, twisting ourselves into something we're not, and continued denigration that has echoes from the scars of childhood. There's a not small subset of neurotypicals who didn't outgrow the schoolyard bullying, and I would pay good money to never deal with them ever again. Socialising is something I cannot do. I can work around large groups no issues (I work for the railway sector), but when it comes to pubs clubs etc they send me into full meltdown. Which is not something anyone wants to witness. " I manage but it's not usually worth it. Like with chronic illness, I pay for it for days of exhaustion afterwards. | |||
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"Going back to my teen, she has always felt different to other people. She really struggled during COVID when everyone was wearing masks, because she couldn't see facial expressions to interpret what was being said. The majority of her teenage tears, she was socially isolated and it's only now that she is starting to make friends. It's not without its problems. Not many people fully understand what it's like to be autistic, how overwhelming it can be. I have learned so much from her, not just about autism, but about understanding, tolerance, perspective taking and how to be a better person. From our experience, the best way to support an autistic person is to ask them what they find helpful, what calms them down when they're overstimulated, what would be a good social event for them. " To be honest with you unless the aspie (our term) or autistic person approaches you and asks for help, you should leave them to themselves. We find interaction with strangers difficult especially if its sudden. If its your daughter ask her if she is ok and if she is, let her crack on. Otherwise she might feel you are smothering her (something I used to feel from my parents, though having lost one now, I miss it dearly) It depends on the severity of the aspergers of course, mine is low functioning meaning I can basically control my brain myself to near full extent, but high functioning people will struggle with day to day tasks and friends/lovers etc is a flat no go zone. We cannot do that interaction. It is why I have never dated anyone and likely never will. | |||
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"Going back to my teen, she has always felt different to other people. She really struggled during COVID when everyone was wearing masks, because she couldn't see facial expressions to interpret what was being said. The majority of her teenage tears, she was socially isolated and it's only now that she is starting to make friends. It's not without its problems. Not many people fully understand what it's like to be autistic, how overwhelming it can be. I have learned so much from her, not just about autism, but about understanding, tolerance, perspective taking and how to be a better person. From our experience, the best way to support an autistic person is to ask them what they find helpful, what calms them down when they're overstimulated, what would be a good social event for them. To be honest with you unless the aspie (our term) or autistic person approaches you and asks for help, you should leave them to themselves. We find interaction with strangers difficult especially if its sudden. If its your daughter ask her if she is ok and if she is, let her crack on. Otherwise she might feel you are smothering her (something I used to feel from my parents, though having lost one now, I miss it dearly) It depends on the severity of the aspergers of course, mine is low functioning meaning I can basically control my brain myself to near full extent, but high functioning people will struggle with day to day tasks and friends/lovers etc is a flat no go zone. We cannot do that interaction. It is why I have never dated anyone and likely never will. " Labelling within the spectrum is contentious. I reject the idea that I'm an Aspie. I'm autistic. (Some are "people with autism") I accept your label and I'll apply it to you, but please don't speak for all of us. | |||
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"Going back to my teen, she has always felt different to other people. She really struggled during COVID when everyone was wearing masks, because she couldn't see facial expressions to interpret what was being said. The majority of her teenage tears, she was socially isolated and it's only now that she is starting to make friends. It's not without its problems. Not many people fully understand what it's like to be autistic, how overwhelming it can be. I have learned so much from her, not just about autism, but about understanding, tolerance, perspective taking and how to be a better person. From our experience, the best way to support an autistic person is to ask them what they find helpful, what calms them down when they're overstimulated, what would be a good social event for them. To be honest with you unless the aspie (our term) or autistic person approaches you and asks for help, you should leave them to themselves. We find interaction with strangers difficult especially if its sudden. If its your daughter ask her if she is ok and if she is, let her crack on. Otherwise she might feel you are smothering her (something I used to feel from my parents, though having lost one now, I miss it dearly) It depends on the severity of the aspergers of course, mine is low functioning meaning I can basically control my brain myself to near full extent, but high functioning people will struggle with day to day tasks and friends/lovers etc is a flat no go zone. We cannot do that interaction. It is why I have never dated anyone and likely never will. " Every autistic person is different. For my teen, she would never ask for help, so I have learned how to read her, her mannerisms, what she doesn't say. From the other autistic people we know - not strangers - they also find it beneficial for people to ask how best they can support the autistic person. As I said, it's very individual. What works for one doesn't work for another. | |||
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"My brother was diagnosed at 4. I love him so much. He's 22 now, mum's 64 and I do worry about the future for him as he'll never be able to lead a life like we do and mum won't be around forever . He can't read or write but he's funny. Myself and my sisters are a lot older than him, bless him he didn't realise we were his sisters for years.
And I think that you've just put into words my biggest fear!
We as parents won't be around forever and I have no idea at this point whether she will be able to live independently and earn a living.
It sounds like your brother is lucky to have you and a supportive family "I recently asked mum if she'd made plans for when she'd gone and she said no. There are 3 of us older sisters so I should think that myself and the youngest one will be left in charge as it were. He's currently in college studying animal care but I think eventually he'll be in an assisted living facility. He's no awareness of money sadly. Can cook basic things now. Not like when he set fire to some noodles as he hadn't added water to the pan..... | |||
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" And (sorry I'm off on one now) I cant think of another disability which gets described in such a way, certainly physical ones don't. But can I also echo Inaswingdress' beautiful comments a few posts above thos one " That is so true.... And thank you | |||
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"Thank you all for your input and feedback. It has given me a lot to think about, lots of insights, some realisations, which I'm hoping I will be able to apply to how I parent with the hope that it might make my daughter's life a little easier. When I get a chance to respond to individual posts in more detail, I will - either here or through private message. "If you know spoon theory - don't apologise for needing to conserve your spoons. I think most of us are posting for you, not needing something for us | |||
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"My 13 year old daughter is diagnosed asd adhd and motor and verbal ticks it was picked up early so we where lucky in that respect but my 25 year old son who is trying to get a diagnosis has made me realise how lacking the resources are for adults." And I'm dreading the days she becomes an adult because I know services are even worse! I hope you're getting the necessary help for you and your daughter as well as being able to support your adult son who has hopefully already got tools and coping strategies for situations he finds difficult. All the best in your journey of support x | |||
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"Thank you all for your input and feedback. It has given me a lot to think about, lots of insights, some realisations, which I'm hoping I will be able to apply to how I parent with the hope that it might make my daughter's life a little easier. When I get a chance to respond to individual posts in more detail, I will - either here or through private message.
If you know spoon theory - don't apologise for needing to conserve your spoons. I think most of us are posting for you, not needing something for us"But you have taken the time, effort and energy to give what I consider very personal information. I'm the kind of person who likes to acknowledge this and show my appreciation. You've mentioned quite a few things in your posts which I'd be interested in exploring - may I pm you? | |||
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"My 13 year old daughter is diagnosed asd adhd and motor and verbal ticks it was picked up early so we where lucky in that respect but my 25 year old son who is trying to get a diagnosis has made me realise how lacking the resources are for adults. And I'm dreading the days she becomes an adult because I know services are even worse! I hope you're getting the necessary help for you and your daughter as well as being able to support your adult son who has hopefully already got tools and coping strategies for situations he finds difficult. All the best in your journey of support x" Maybe start to guide her towards finding her voice, her people, etc. Autistic adults do tend to have to make it up as we go along due to lack of support, in my experience - she'll have a head start. Non toxic support groups, by people with autism for people with autism. (there is often overlap with other neurodivergence - ADHD content often gives me some great food for thought) | |||
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"Thank you all for your input and feedback. It has given me a lot to think about, lots of insights, some realisations, which I'm hoping I will be able to apply to how I parent with the hope that it might make my daughter's life a little easier. When I get a chance to respond to individual posts in more detail, I will - either here or through private message.
If you know spoon theory - don't apologise for needing to conserve your spoons. I think most of us are posting for you, not needing something for us
But you have taken the time, effort and energy to give what I consider very personal information.
I'm the kind of person who likes to acknowledge this and show my appreciation.
You've mentioned quite a few things in your posts which I'd be interested in exploring - may I pm you?"My filters are up the wazoo - I've broken my filter for you by messaging you | |||
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"I keep writing out a massive response to this and then deleting thinking I am oversharing, so will just put my daughters always ask me if Im dissapointed in them for not being able to do the things they and society feels they should be doing, and of course my reply is always No, never dissapointed. We will just find our way through thats right for us. Sending love, it is a hard battle. Xx" I'm not disappointed in her, if anything - I'm disappointed for her. But even with this thought, I think that she doesn't enjoy the things that neurotypicals enjoy, so she doesn't feel she's missing out as such so is it my own selfishness being disappointed for her? In fact, she prefers to miss out because it's stressful...and that's where my worry starts! We're not around as parents forever - she'll need skills to live independently and that's where striking a balance of how much is too much and how much is too little with regards to schooling, social interactions etc... We will find our way (and you) and I'm delighted to see such a supportive community here | |||
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"I keep writing out a massive response to this and then deleting thinking I am oversharing, so will just put my daughters always ask me if Im dissapointed in them for not being able to do the things they and society feels they should be doing, and of course my reply is always No, never dissapointed. We will just find our way through thats right for us. Sending love, it is a hard battle. Xx I'm not disappointed in her, if anything - I'm disappointed for her. But even with this thought, I think that she doesn't enjoy the things that neurotypicals enjoy, so she doesn't feel she's missing out as such so is it my own selfishness being disappointed for her? In fact, she prefers to miss out because it's stressful...and that's where my worry starts! We're not around as parents forever - she'll need skills to live independently and that's where striking a balance of how much is too much and how much is too little with regards to schooling, social interactions etc... We will find our way (and you) and I'm delighted to see such a supportive community here "It's not quite the same, but I like to think about it like this My mum trained as a scientist. She gave me the tools to appreciate science, but it's just not my thing. Mum doesn't appreciate the things that are my thing. She appreciates that I do. Neither of us are missing out, we just have our own stuff. I can see why a lot of NT stuff is enjoyable to NTs (and some of it baffles me - wtf do you want to do that for? No one forces you? You do that on purpose?). But it's like science to me. Mum showed me, she explained, I went on my own path. The difference between science and (say) failing to have a conversation where you can't hear yourself think in a crowded stinky pub - there's little or no bullying or pressure to make me involve myself in science. People will let me do my own thing and it's just fine. The pub, less so. | |||
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"I keep writing out a massive response to this and then deleting thinking I am oversharing, so will just put my daughters always ask me if Im dissapointed in them for not being able to do the things they and society feels they should be doing, and of course my reply is always No, never dissapointed. We will just find our way through thats right for us. Sending love, it is a hard battle. Xx I'm not disappointed in her, if anything - I'm disappointed for her. But even with this thought, I think that she doesn't enjoy the things that neurotypicals enjoy, so she doesn't feel she's missing out as such so is it my own selfishness being disappointed for her? In fact, she prefers to miss out because it's stressful...and that's where my worry starts! We're not around as parents forever - she'll need skills to live independently and that's where striking a balance of how much is too much and how much is too little with regards to schooling, social interactions etc... We will find our way (and you) and I'm delighted to see such a supportive community here
It's not quite the same, but I like to think about it like this
My mum trained as a scientist. She gave me the tools to appreciate science, but it's just not my thing.
Mum doesn't appreciate the things that are my thing. She appreciates that I do.
Neither of us are missing out, we just have our own stuff.
I can see why a lot of NT stuff is enjoyable to NTs (and some of it baffles me - wtf do you want to do that for? No one forces you? You do that on purpose?). But it's like science to me. Mum showed me, she explained, I went on my own path.
The difference between science and (say) failing to have a conversation where you can't hear yourself think in a crowded stinky pub - there's little or no bullying or pressure to make me involve myself in science. People will let me do my own thing and it's just fine. The pub, less so. "Yes, that makes a lot of sense | |||
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"A bit off topic but theres a very good French detective show on C4 featuring an autistic lady criminalist called Astrid: The Paris Murders. There are scenes throughout the series, where she attends a self help group and they discuss the "weirdness" of 'normal' people and their general inability to see things from different perspectives. Unlike the original Belgian series and UK version of "Professor T" it's not played out for comic effect. " That sounds like my kinda show, thanks | |||
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" Thank you. And maybe that's where I need to focus more energy - rather than just giving her the tools to cope, but to help to understand herself better. Yes, I absolutely agree - the tools are so much more productive when you understand why as well as how. Asperger’s is an outdated term now (everything is classed as autism without the specific separate categorisation), but none the less, the book Aspergirls by Rudy Simone helped me understand a massive amount about myself. Reading it, I felt understood and heard for the first time. I thoroughly recommended it. Dru xx" I'm glad you had that breakthrough moment! And certainly something to explore with my daughter. Thank you | |||
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"It's been very interesting reading the thread on adults who found out late that they are on the spectrum. Thank you all for your insights .
As I am going through a very tough time trying to support my autistic teen (diagnosed late with little to no services available and particularly having gone through lockdowns at a crucial developmental stage which has severely impacted any social interactions), I would like to hear from those of you with a late diagnosis/realisation, what it is you would have wanted your parents to know, say and/or do? How could they have been more supportive?"Try putting this question to the folk in the wonky brain thread in the swingers chat? I'm on the spectrum (not a late diagnosis though), but perhaps some of the others in the thread have that may be able to help in some way. x | |||
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"I was diagnosed with aspergers in 2002. I recommend you buy a copy of freaks geeks and the aspergers syndrome, and also watch a Netflix show called Atypical. It helps people to understand what our brains are thinking every day. " I watched Atypical and absolutely loved it, probably because I could identify with a lot of the program. Thanks for the advice | |||
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" Many of us learn early that socialising is difficult and we'll be rejected no hard we try to fit in. There must be a way and so many of us do keep trying, but honestly, isolation is often preferable to walking on eggshells, twisting ourselves into something we're not, and continued denigration that has echoes from the scars of childhood. There's a not small subset of neurotypicals who didn't outgrow the schoolyard bullying, and I would pay good money to never deal with them ever again. Socialising is something I cannot do. I can work around large groups no issues (I work for the railway sector), but when it comes to pubs clubs etc they send me into full meltdown. Which is not something anyone wants to witness. I manage but it's not usually worth it. Like with chronic illness, I pay for it for days of exhaustion afterwards." I'm so sorry that you feel like that about socialising with neurotypicals. I know there's a lot of nastiness out there but we're not all bad. In fairness, as a neuro typical, I still prefer the surroundings of my own home to a pub or nightclub any day and am quite content in the company of my own family. I know how tiring I find events or gatherings, so I can only imagine the toll it takes on you... | |||
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"Going back to my teen, she has always felt different to other people. She really struggled during COVID when everyone was wearing masks, because she couldn't see facial expressions to interpret what was being said. The majority of her teenage tears, she was socially isolated and it's only now that she is starting to make friends. It's not without its problems. Not many people fully understand what it's like to be autistic, how overwhelming it can be. I have learned so much from her, not just about autism, but about understanding, tolerance, perspective taking and how to be a better person. From our experience, the best way to support an autistic person is to ask them what they find helpful, what calms them down when they're overstimulated, what would be a good social event for them. " Thank you, delighted to hear your daughter is making friends now | |||
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"Op, you sound like you're doing an amazing job. The fact you're even on here asking these questions is proof of your love and support. I didn't have a supportive home environment as an undiagnosed autistic teen and since my diagnosis in 2018 I assumed that accounted for my lifelong MH difficulties. I'm not so sure now due to how much my son is currently struggling. My autistic teen was diagnosed age 11, 3 years ago. His biggest challenge has always been low self-esteem and feeling like a failure because he doesn't think he fits in. As much as we, his family, endeavour to provide a safe, loving, validating environment, whenever he interacts with the outside world he is painfully aware of his differences and hasn't yet learned to accept himself. He has a lovely group of friends, but even with them he struggles. His analytical, perfectionist brain is constantly evaluating his performance and drawing the conclusion that he is "wrong". As a result, an awful lot of his emotional energy goes into masking and this utterly exhausts him. He's on the brink of burnout right now and is experiencing some very dark thoughts. He sees a therapist to help him work through his feelings of inadequacy and to teach him how to recognise and acknowledge his positives, but it's early days and he has a long journey ahead of him. He's amazingly bright, curious, funny, has boundless empathy, yet recognises none of it. It's heartbreaking to see your child in so much pain and to not be able to do anything to make it better. " Thank you. I think that's a big issue - they just don't realise what lovely people they are or appreciate themselves. Comparing ourselves and our (in) abilities and differences is something we are all guilty of at the best of times. She is a perfectionist, like your son, unfortunately no friends to speak of but also has a therapist to help her but very early days. May they find their way to happiness with our support. | |||
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"My 13 year old daughter is diagnosed asd adhd and motor and verbal ticks it was picked up early so we where lucky in that respect but my 25 year old son who is trying to get a diagnosis has made me realise how lacking the resources are for adults. And I'm dreading the days she becomes an adult because I know services are even worse! I hope you're getting the necessary help for you and your daughter as well as being able to support your adult son who has hopefully already got tools and coping strategies for situations he finds difficult. All the best in your journey of support x Maybe start to guide her towards finding her voice, her people, etc. Autistic adults do tend to have to make it up as we go along due to lack of support, in my experience - she'll have a head start. Non toxic support groups, by people with autism for people with autism. (there is often overlap with other neurodivergence - ADHD content often gives me some great food for thought)" She balks at any social interactions. But I'll see if there's a possibility of directing her to online groups. That might be less daunting. | |||
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" Yes. "high functioning" often means "more pleasing to non autistic people", even though keeping up being pleasing can be detrimental to us psychologically and even physically." Ha! Yes, definitely! | |||
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" Many of us learn early that socialising is difficult and we'll be rejected no hard we try to fit in. There must be a way and so many of us do keep trying, but honestly, isolation is often preferable to walking on eggshells, twisting ourselves into something we're not, and continued denigration that has echoes from the scars of childhood. There's a not small subset of neurotypicals who didn't outgrow the schoolyard bullying, and I would pay good money to never deal with them ever again. Socialising is something I cannot do. I can work around large groups no issues (I work for the railway sector), but when it comes to pubs clubs etc they send me into full meltdown. Which is not something anyone wants to witness. I manage but it's not usually worth it. Like with chronic illness, I pay for it for days of exhaustion afterwards. I'm so sorry that you feel like that about socialising with neurotypicals. I know there's a lot of nastiness out there but we're not all bad. In fairness, as a neuro typical, I still prefer the surroundings of my own home to a pub or nightclub any day and am quite content in the company of my own family. I know how tiring I find events or gatherings, so I can only imagine the toll it takes on you..." It's not all neurotypicals all the time. For me it's crowds and strangers. This is probably the world's worst analogy, but imagine trying to speak a second language while juggling. I can sort of do "acceptable to neurotypical" but it's hard work. The same way that I can construct sentences in languages I've learned other than my native language, but it requires some thinking. Now imagine trying to construct sentences in Dutch while also trying to juggle more and more balls. Compared to, ok I can be acceptable to neurotypicals ish. Then we add loud music which I'm sensitive too. Pressure to drink alcohol which I don't like. Everybody is shouting. There's lots of lights in random directions. People are behaving unpredictably because alcohol, which is, I dunno, not only another ball in the air but also "is that Dutch or is that German?" to have to think about. I may have had alcohol and therefore I'm less with it and also my grasp on that complicated construction in Dutch is evading me right now. A meltdown is me dropping the balls and telling everyone to fuck off. Probably in English because Dutch (for the purposes of my analogy only) can go fuck itself. Then probably spending days miserable and in pain. I can see the signs of meltdown coming and usually manage to avoid it, but it sure ain't pretty. | |||
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"There’s been a lot of science suggesting gluten free is a factor in as much as those in the spectrum tend to only eat certain foods and those certain foods can cause triggers in episodes, obviously I’m generalising here and there’s plenty to find in terms of studies, a lot of it is common sense ie reduce processed and sugary foods, some strong evidence suggesting very low carb diets can bring more stability too, I’m butchering this but what I’m getting at is diet when you are on the spectrum is absolutely key" I had an extended experiment with this, and it didn't yield good results for me. | |||
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"Going back the the original question, I don't think I could fault anything my parents did. They were always patient and supportive, despite not having a diagnosis until well into my 20s. They didn't coddle me, however. I see too many ASDs treated like little emperors and I think it really stunts their development. Yes, in an ideal world everyone would be positive and understanding but this isn't an ideal world. Parents should be exposing them to 'normal' society and people otherwise they will remain children forever. " I think there's a balance to had between coddling people and saddling them with a lifetime of PTSD. As a victim of the latter, less of this please! | |||
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"There’s been a lot of science suggesting gluten free is a factor in as much as those in the spectrum tend to only eat certain foods and those certain foods can cause triggers in episodes, obviously I’m generalising here and there’s plenty to find in terms of studies, a lot of it is common sense ie reduce processed and sugary foods, some strong evidence suggesting very low carb diets can bring more stability too, I’m butchering this but what I’m getting at is diet when you are on the spectrum is absolutely key" This is absolutely correct. Studies have shown that the co-modbidity between autism and gut-related issues is staggering. I'm autistic, coeliac and lactose intolerant. My meltdowns used to be frequent before I addressed my dietary needs, I'm able to cope much better now. It won't make them go away, but the compounding issues being on the wrong diet causes can be debilitating for an autistic person and definitely lead to worse mental health too. | |||
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"Going back the the original question, I don't think I could fault anything my parents did. They were always patient and supportive, despite not having a diagnosis until well into my 20s. They didn't coddle me, however. I see too many ASDs treated like little emperors and I think it really stunts their development. Yes, in an ideal world everyone would be positive and understanding but this isn't an ideal world. Parents should be exposing them to 'normal' society and people otherwise they will remain children forever. " While I don't entirely disagree, this does have an air of 'man up' to it My parents never knew I was autistic but repeatedly pushed me to do things I clearly was uncomfortable and then punished me for having a tantrum (which was obviously a meltdown). I'm very child like in a number of aspects, that's never goung to change amd since I was diagnosed I've happily accepted that and will never apologise for it. But this dies feel like you are saying children should be taught or forced in to masking to fit in to a neurotypical world. I'm not sure that's healthy | |||
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"Going back the the original question, I don't think I could fault anything my parents did. They were always patient and supportive, despite not having a diagnosis until well into my 20s. They didn't coddle me, however. I see too many ASDs treated like little emperors and I think it really stunts their development. Yes, in an ideal world everyone would be positive and understanding but this isn't an ideal world. Parents should be exposing them to 'normal' society and people otherwise they will remain children forever. While I don't entirely disagree, this does have an air of 'man up' to it My parents never knew I was autistic but repeatedly pushed me to do things I clearly was uncomfortable and then punished me for having a tantrum (which was obviously a meltdown). I'm very child like in a number of aspects, that's never goung to change amd since I was diagnosed I've happily accepted that and will never apologise for it. But this dies feel like you are saying children should be taught or forced in to masking to fit in to a neurotypical world. I'm not sure that's healthy " Yes. There needs to be a degree of give and take. Less traumatising kids because the world is cruel, and more smacking the world upside the head and telling it to knock the fuck off. (I am not for a moment saying that people on the spectrum shouldn't be taught how to adapt - it's of course necessary - but a little bit of reciprocity would be a fine thing. Just a little. If I'm walking backwards in heels with a smile pasted on my face ignoring my broken ankle while speaking in a foreign language and dancing to the NT dance all the time... maybe the NTs can try 5% of that effort? And those who insist on being arseholes can be smacked upside the head?) | |||
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"Going back the the original question, I don't think I could fault anything my parents did. They were always patient and supportive, despite not having a diagnosis until well into my 20s. They didn't coddle me, however. I see too many ASDs treated like little emperors and I think it really stunts their development. Yes, in an ideal world everyone would be positive and understanding but this isn't an ideal world. Parents should be exposing them to 'normal' society and people otherwise they will remain children forever. " I have to disagree with you on this. Life expectancy for an autistic person who doesn't experience epileptic seizures is only around 57 years, and that is because of suicide. Many of those undiagnosed autistic kids from 20, 30, 40, 50 years ago who were forced to plaster a neurotypical mask on their faces are suffering so much now that they would rather die than continue the pain of living. I'll continue to "mollycoddle" my child by offering a safe space for him to be who he is with no pressure to perform the neurotypical dance to appease others. | |||
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"Going back the the original question, I don't think I could fault anything my parents did. They were always patient and supportive, despite not having a diagnosis until well into my 20s. They didn't coddle me, however. I see too many ASDs treated like little emperors and I think it really stunts their development. Yes, in an ideal world everyone would be positive and understanding but this isn't an ideal world. Parents should be exposing them to 'normal' society and people otherwise they will remain children forever. I have to disagree with you on this. Life expectancy for an autistic person who doesn't experience epileptic seizures is only around 57 years, and that is because of suicide. Many of those undiagnosed autistic kids from 20, 30, 40, 50 years ago who were forced to plaster a neurotypical mask on their faces are suffering so much now that they would rather die than continue the pain of living. I'll continue to "mollycoddle" my child by offering a safe space for him to be who he is with no pressure to perform the neurotypical dance to appease others." You don't need to tell me about life expectancy and suicide. I've been there. But what I've observed is that the education system, while well-intentioned, is segregating disabled people and *making* them more disabled. I've often wondered what my life would have been like if I'd got diagnosed soon enough to get support (I've recently learned that a specialist teacher knew I was ASD but chose to do nothing, but that's another story). I always assumed it would have turned out better, but looking at other Aspies my age I'm increasingly convinced that isn't true. I'm not suggesting 'plastering' a NT mask on the child; I've tried that. Spoiler - disaster. But in moderation I think ASD children/young adults should be encouraged to mix, try new things, diets, places etc. and then adult life will become easier for them. You can't break autism, but you can bend it quite a bit. Also, I can't overstate the benefits of exercise. Regular exercise improves everyone's mood and it's also given my confidence, determination and resilience a huge boost. | |||
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" You don't need to tell me about life expectancy and suicide. I've been there. But what I've observed is that the education system, while well-intentioned, is segregating disabled people and *making* them more disabled. I've often wondered what my life would have been like if I'd got diagnosed soon enough to get support (I've recently learned that a specialist teacher knew I was ASD but chose to do nothing, but that's another story). I always assumed it would have turned out better, but looking at other Aspies my age I'm increasingly convinced that isn't true. I'm not suggesting 'plastering' a NT mask on the child; I've tried that. Spoiler - disaster. But in moderation I think ASD children/young adults should be encouraged to mix, try new things, diets, places etc. and then adult life will become easier for them. You can't break autism, but you can bend it quite a bit. Also, I can't overstate the benefits of exercise. Regular exercise improves everyone's mood and it's also given my confidence, determination and resilience a huge boost. " Without going into detail of my personal situation - a lot of what you say is likely right though I'm not sure how much I agree on the initial statement. Our education system isn't fit for neurotypicals at the best of times (that's my personal opinion anyway), never mind neurodiverse children. My daughter attends mainstream (massively reduced hours) but is just not able. I'm not sure how able she'd be for "special" (excuse if I'm using wrong terminology) school either (because it's still a social setting which absolutely drains her). But she has to attend as per the requirement by law because I simply can't homeschool. I encourage my daughter on a daily basis to eat healthier foods - she knows what healthy foods are (as do I!!!) but is "stuck" with what she considers her safe foods (I'm sure many on the spectrum can identify with this) and is loathe to try anything new. Bar forcing healthy foods down her throat or starving her (and as someone who does self harm, she's well able to hold out), that's not happening - apart from the fact that I would never do this to my child! We have tried various ways of getting her to exercise. Thankfully she does have one or two interests which get her moving but the reality is, she needs to do more to build a stronger core and build more muscle tone. I do believe that there are things that she will have to (hopefully) grow into, realisations she will have to come to by herself, by maturing and understanding herself and her own needs better. Hopefully we're doing enough as parents to support her in the right direction. I know she struggles, we struggle but we fight the good fight every day. | |||
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"Food, exercise, anything else - I was about this age when my parents experimented with various interventions because they'd just been introduced to the notion that I might be on the spectrum. (I was not at this stage diagnosed) It was put upon me and it made me feel furious and disempowered. Even if the interventions had been helpful, I resisted with everything I had and it was all counterproductive. For my wellbeing and for my relationship with my family. I needed to feel like a partner in managing my own health. Obviously there need to be guard rails and limits placed upon kids, including teenagers, but I think 15 is plenty old enough to play a big role in deciding what interventions to try and how far she's prepared to go outside her comfort zone." Yes, I agree totally... and we would have always tried to build on anything that she had shown an interest in, that would have been part of a healthier lifestyle, where practicable and affordable. We include her in (most) decisions and we've let off if interventions are not working, as she has had to, when she's realised she's gone too far outside of her comfort zone too... | |||
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" You don't need to tell me about life expectancy and suicide. I've been there. But what I've observed is that the education system, while well-intentioned, is segregating disabled people and *making* them more disabled. I've often wondered what my life would have been like if I'd got diagnosed soon enough to get support (I've recently learned that a specialist teacher knew I was ASD but chose to do nothing, but that's another story). I always assumed it would have turned out better, but looking at other Aspies my age I'm increasingly convinced that isn't true. I'm not suggesting 'plastering' a NT mask on the child; I've tried that. Spoiler - disaster. But in moderation I think ASD children/young adults should be encouraged to mix, try new things, diets, places etc. and then adult life will become easier for them. You can't break autism, but you can bend it quite a bit. Also, I can't overstate the benefits of exercise. Regular exercise improves everyone's mood and it's also given my confidence, determination and resilience a huge boost. Without going into detail of my personal situation - a lot of what you say is likely right though I'm not sure how much I agree on the initial statement. Our education system isn't fit for neurotypicals at the best of times (that's my personal opinion anyway), never mind neurodiverse children. My daughter attends mainstream (massively reduced hours) but is just not able. I'm not sure how able she'd be for "special" (excuse if I'm using wrong terminology) school either (because it's still a social setting which absolutely drains her). But she has to attend as per the requirement by law because I simply can't homeschool. I encourage my daughter on a daily basis to eat healthier foods - she knows what healthy foods are (as do I!!!) but is "stuck" with what she considers her safe foods (I'm sure many on the spectrum can identify with this) and is loathe to try anything new. Bar forcing healthy foods down her throat or starving her (and as someone who does self harm, she's well able to hold out), that's not happening - apart from the fact that I would never do this to my child! We have tried various ways of getting her to exercise. Thankfully she does have one or two interests which get her moving but the reality is, she needs to do more to build a stronger core and build more muscle tone. I do believe that there are things that she will have to (hopefully) grow into, realisations she will have to come to by herself, by maturing and understanding herself and her own needs better. Hopefully we're doing enough as parents to support her in the right direction. I know she struggles, we struggle but we fight the good fight every day." Jyst touching on the food issue, I would happily have pasta and chicken with pesto every day and not get bored. I have got better but I still find eating out difficult and my partner is massively supportive of how fussy I can be with food. As a child ahd a teenager I was regularly forced to clear my plate before being allowed to leave the table, there are foods that made me gag and wretch and to this day just the mention of them visibily upsets me. I like to think had they known, my parents would have been kinder, but I think neurotypicals will never be able to comprehend how negatively and traumatically some foods upset us they can be sensory hell. It goes way beyond not liking a food. I'm genuinely in awe of your posts on this thread, your desire to learn and your love and support for your daughter, this post is very much intended as adding context rather than any form of criticism | |||
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Just doing the best we can as a parent, we aren't perfect, is all we can aim for.
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"Food, exercise, anything else - I was about this age when my parents experimented with various interventions because they'd just been introduced to the notion that I might be on the spectrum. (I was not at this stage diagnosed) It was put upon me and it made me feel furious and disempowered. Even if the interventions had been helpful, I resisted with everything I had and it was all counterproductive. For my wellbeing and for my relationship with my family. I needed to feel like a partner in managing my own health. Obviously there need to be guard rails and limits placed upon kids, including teenagers, but I think 15 is plenty old enough to play a big role in deciding what interventions to try and how far she's prepared to go outside her comfort zone. Yes, I agree totally... and we would have always tried to build on anything that she had shown an interest in, that would have been part of a healthier lifestyle, where practicable and affordable. We include her in (most) decisions and we've let off if interventions are not working, as she has had to, when she's realised she's gone too far outside of her comfort zone too..." Brilliant | |||
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