Can I ask about your adult autistic kids?

[withthelococ]

If you have autistic children in their 20's can I ask how independent are your children? How affected by their autism do you think they are? Have they ever been in a relationship/have friends?

My DC in his teens and high-functioning (if that is the right word) but struggles with social contact and making friends. I I just wonder what his future could look like.

It’s fine to go with what an individual prefers. However when referring to autistic people in general, I think it’s reasonable to go with the majority preference. In multiple different polls, about 80-90% of autistic people prefer identity-first over person-first language.

My eldest is 23 and left home to live in residential accommodation when he was 18. This was more for support for his mental illness than autism. He now lives in supported accommodation, works in two voluntary roles and may be ready for paid employment in the near future.

My youngest is 21 and lives at home. He is currently economically inactive.

For both my sons, it is mental illness rather than autism that poses the most difficult barriers. They are intelligent young people who have a fascinating outlook on life, but they both have had a raft of mental health difficulties since they were in their middle teens.

It’s fine to go with what an individual prefers. However when referring to autistic people in general, I think it’s reasonable to go with the majority preference. In multiple different polls, about 80-90% of autistic people prefer identity-first over person-first language.

But you picked someone up for describing their own sister, who presumably is ok with the language that poster uses.

My dd is 22 and is in supported living. She went to a residential college for 3 years prior to that.

I never dreamed that she could make the progress she has. If she'd stayed at home we could never have achieved this.

When she comes home at weekends I see her regress and old habits and learned behaviours kick back in.

She struggles to find friends which is her biggest concern. She finds them mainly online.

She met a lovely boy, also autistic and they had a relationship for a while. It was very sweet.

She's thinking about work one day but needs to go to college for a bit first. She missed a lot of education due to her MH.

I think she probably has undiagnosed learning difficulties. I'm hoping she can make friends there too.

I've set up a local FB group for 18 - 30 young adults with autism. We're planning some outings and social meet ups.

It's so hard to imagine their future when they're little isn't it?

I'm autistic, I think I'm doing OK with it - just completed a career change university course, married, two kids, dog.

Fucking hate the self-appointed internet language police though whenever it comes up. My Autism = I get to decide how it's referred to - if I want to paint it purple and call it Dave it's my right to do so. They rarely contribute anything to the discussion - just plop in with their righteous bullshit and bugger off again.

It's exhausting being told how you should refer to yourself/your family, isn't it?

I just cba with the 'here's a link' to some further bollox. The biggest thing I struggle with being autistic is not being listed to. And here we are again being ignored and told what language to use

@LoveLimesoda

The way I see it, it’s just an adjective. When we describe someone as tall/gay/kind/German/whatever, we aren’t defining them by those attributes. I don’t see why autism should be any different. But people talk about it differently because it’s a stigmatised condition that is seen as being inherently negative, shameful and akin to a disease. One powerful way of fighting that stigma is by changing the way we talk about it.

Autism is part of who I am and I’m not ashamed about it. If we continue to talk about autism like it’s a disease, people will continue to think it’s a disease and behave accordingly.

one of my best friends is a man that sounds like your son.

He found his tribe in university (related to an interest) and has had a booming social life since then. His friends know about his needs and really do understand him. He has probably learned to ‘mask’ more since his school days.

the only issue he has had is with his love life, desperately wants a girlfriend and surrounds himself with beautiful intelligent girls from his uni days who are all partnered up or entangled with other men. He develops massive crushes on them that don’t go anywhere and literally will only consider potential dates with trait a), b) and c) in a very black and white way.

I think everyone should have high standards but I know from being very close friends with him that any woman would need to make a lot of allowances and sacrifices for his routines, so not being able to make sacrifices (regarding looks, beliefs, jobs, etc.) on his own part isn’t going to help him

My son has chess lessons written into his EHCP on this very basis.

Wherever he lives, wherever he goes, he'll always be able to join in a social activity that is familiar, structured, reliable and where he knows precisely what the expectations are. There won't be small talk predicated on unspoken rules, which he finds so hard to navigate, and being able at chess and a nice person will give him an entry into an existing social group.

Might that work for you? There are junior chess clubs in most areas I think. And they are always very welcoming to and full of autistic kids - boys and girls.

I have autism. The good, I have a husband, who also has autism, I managed to do part of a university course but didn't fully complete it, I have hobbies I enjoy and relatively happy despite some down periods. I don't have friends tbh but I'm happy with that, it made me pretty stressed and it wasn't really what I wanted, just thought I should.
The bad, serious lack of jobs/career spent the vast majority of my adult life unemployed apart from some brief periods and periods or struggling to go outside.

This thread is lovely. DS is 13 and already exceeding my expectations. I do wonder if he will leave home and live independently, but we have time. He is in a specialist school which is amazing and they learn many wonderful things.

I don't worry about him as he is so tuned into technology, I am sure he will be fine for work. He is a very sociable, happy young man so far.

@ahna68

My DS8 has regressive autism in that he had typical development til he was 2 then lost all his speech in 6 months. He started talking again a few weeks before he started school. It was very tough - the docs suspected he could have a serious medical issues and he had loads of tests and scans.

Myself and my 3 young adult children are all autistic. One of mine also has severe epilepsy and learning disabilities and needs 24/7 supervision and care. He will never be independent in any way. He’s mostly non verbal too.

DS crashed out of AS levels but is now doing a BTEC in a subject he loves and making plans to go to University Sept 23. He is very sociable, seems to be the one all his (mostly neurodivergent) friends turn to for help or advice. I am biased but he is such a lovely person, always helping others and very keen to do things like litter picking.

DD has just finished the third year of a 4 year STEM degree. She struggled a lot at first and has needed a lot of support with self care and housekeeping, usually involving me spending hours on FaceTime several times a week helping her schedule eating, sleeping, etc as she just cannot function without a high level of support. I do all her shopping and have it delivered as she struggles with that too. Socially she struggled in the beginning and was taken advantage of financially but now has a lovely group of friends. She’s never dated before but has had a boyfriend for about three months. He is also autistic.

The teen years for mine were really difficult, no matter how much schools say they are accepting I think neurodivergent people are still faced with misunderstanding and very often the school system makes it so much harder. Mine put up with bullying that was never effectively dealt with. This culminated in my ds being the victim of a serious crime perpetrated by former bullies and meaning we had to move hundreds of miles away. It has been very hard for them to lose everything they were familiar with.

Both my DS's are ND and both have been diagnosed with Autism, DS1 much later than DS2. DS1 also has dyslexia and dypraxia.

DS1 just graduated from university. He was always very inquisitive and loved facts, so a degree in economics and statistics really suited him. He found his tribe and seems happy and settled. He has a graduate role where he will be using numbers every day and he seems settled. The University gave him lots of support and that really helped.

DS2 has 'classic' autism and had a regression at about 2, where he lost all of his language and didnt get that bacj until about 6. He is in a special school and his progress is slower, but he loves life and is enjoying the journey. Who knows what the future brings, but as long as he is happy we will see what happens.

I agree with others that the policing of others language and how they describe themselves can be really damaging. So much of the focus tends to be on whether peope describe themselves and thier loved ones as Autistic or as a person with Autism. Just like many other things, its surely personal choice. These squabbles then draw away from the things that are important to most people who are affected, like support, understanding and acceptance.

I completely agree that the semantics just gets in the way of the more important issues. I got my arse handed to me on a plate on an online "support" (haha!) forum for parents of autistic children, because describing my DS as "classically autistic" was grossly offensive and ableist. Even though those words were on the letter from the Lorna Wing centre confirming his diagnosis. And I was told that as a NT person my opinion was worthless anyway. I tried to explain that I was trying to convey his difficulties and actually got trolled, as in, direct angry messages calling me all kinds of names, saying that my DS was better off in care than with me. Bewildering...

That said, I find it's mostly middle class parents who want people to know that they/their kids have HFA (subtext: the Sheldon type, rather than the type that makes you thick and incapable of conventional success). If we're using those labels, then my DS would definitely be low-functioning because there are loads of things he can't do (use a toilet, tie his shoelaces, interact with other children). But his IQ is 164 which I suspect is rather higher than most of us.

Just like many other things, its surely personal choice. These squabbles then draw away from the things that are important to most people who are affected, like support, understanding and acceptance.

Completely agree, and I love this thread for reflecting the very individual degrees and experience of having Autism/being Autistic, the more knowledge out there the better.

@Deguster that's horrendous you were treated that way, when you were there for support, I don't know why they decided to jump on you - completely unfair. And your son's IQ - wow!

Totally agree @alnawire I wish people would stop telling me I can't describe my high functioning son as high functioning, if they don't want to be described as that then I have no problem with it but let me describe it how I see it. And stop telling me I can't describe him as having Aspergers Syndrome - because everyone's just been lumped into ASD now - when that is what his diagnosis was (I've been told that before too). And he would prefer to be described as having Aspergers syndrome than being autistic because then he doesn't feel like he's so defined by it - so please don't tell me that's wrong either just because you don't like it. Do what works for you, it doesn't necessarily work the same for everyone else.

Nobody says you're not allowed or it's unhelpful to distinguish between a headache and a migraine do they? No one says don't tell the doctor it's a headache because then you won't get any help but if you call if a migraine you will - because at the end of the day the doctor asks questions and works out what it is and what's needed themselves. When my son was diagnosed we got a reading list and were offered a course with a 9 month waiting list for it, there is very little help available out there for anyone without significant needs, changing labels slightly does not and will not change that fact. Because it's about needs not labels at the end of the day.

The idea that it's as simple as one label denies this and another denies that sounds great as a meme but if your support or control over your life were based simply on whether someone thought you were high or low functioning then you're going to have a whole raft of problems. A detailed understanding of an individual autistic person would be needed to really help them in anyway because so few assumptions can be made - your parents thinking you are high or low functioning is likely to be of little relevance to people who are looking at you in far greater detail or have a far greater understanding of the challenges - but that doesn't mean it's not a useful/understood term in day to day life.

If I said to my son's doctor he had high functioning autism he would understand what I meant by that - but I wouldn't assume he knew everything about my son's condition, if I said he had classic autism then I would expect him to know what I meant by that but again not all his individual challenges. Just because a label doesn't tell you every single thing doesn't mean it's not at all useful or that it means you have either no difficulties or no agency.

If a label is being conveniently abused to avoid providing proper provision then it's not the label that's the problem, it's the people abusing it.

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That's very strange as 'classic autism' is/was a proper diagnosis. There are/were 3 possible autism diagnosis, classic autism, Asperger's, and PDD-NOS. Very odd that they took exception to it.

I also don’t mind the high / low functioning thing - it helps me communicate with people with a lesser understanding of SEN.

I am not as clever as Sheldon, but I do have my spot on the sofa 🤣

I find hairdresser appointments my absolute hell. The smells, the chatting, and then BAM! All of a sudden you look different too.

I’m due my next blonde highlights appointment and a hair cut (I love my hair!) but Im finding that the older I get the more I struggle with the masking.

when dd got her diagnosis, the doctor advised that she be encouraged towards a career that would play to her strengths. We understood that well. I’m in quasi-academia where my unique personality is well accepted. She is planning a career in science and I’m not worried about her at all.

its really important to accept who you are and not try to conform too much. There are some places where our differences are actually valued.

Aaah you see @couldbeahobbit you need a hairdresser like mine who is probably autistic herself (her daughter's just been diagnosed and she's wondering about herself - little bit of chat then she plays on her phone while you're marinading under the bleach!

That's very strange as 'classic autism' is/was a proper diagnosis. There are/were 3 possible autism diagnosis, classic autism, Asperger's, and PDD-NOS. Very odd that they took exception to it

@Fladdermus - I did make that point whilst they were tearing me a new one! 😂Apparently, medical professionals are amongst the worst offenders when it comes to using ableist language, and any "qualifier" (including classic, severe, mild, etc) is ableist because you can only be autistic or neurotypical.

I know that Aspergers is not in the most recent DSM, but I think it's still used in some places. I kind of understand that being removed, because Asp was a Nazi eugenicist and his research into autistic people that led to the term being coined was not entirely ethical (to put it mildly!)

I personally don't like the high/low functioning because I don't think they are accurate at conveying information about how an autistic person experiences life, e.g.

Can't tie shoes - low functioning
Brilliant at Chess - high functioning
Socially inept - low functioning
Memorised entire London Underground at age 4 - high functioning
Couldn't write basic letters until age 6 - low functioning

All of them are DS! High IQ but EHCP since nursery and FT 1:1 teaching assistant since preschool. Floundering in mainstream, but local specialist places don't tend to cater for mainstream ability.

My brother has autism and so does my DS. My brother has struggled a lot, he especially did during his teen years, he had a lot of anxiety and can’t always communicate that to others. Things have gotten a lot better for him now though, he’s in his late 20’s, living in a supported living accommodation where he has his own flat something we weren’t sure he’d ever be able to cope with and he’s started a part time job. He’s never been too interested in making friends and honestly I don’t think it’s something he needs to do if he doesn’t want to, he has the people he likes most (mainly family) and he enjoys spending time with them at least.

I am autistic and have had a very successful career reaching top management very young but it wasn't without problems. Poor social skills (hate all the pleasantries and too brutally honest for my own good) have definitely created a lot of issues but I am focused, single-minded and determined and that meant that I kept going despite the set-backs.

My son is also autistic. He is quite volatile so although he gets offered jobs, sticking with them has been more difficult for him. He takes longer than most to learn new things and he finds it hard to deal with disappointments or when he has made mistakes at work, so is disappointed in himself. Worst of all, he seems to self-sabotage when something good happens and then sinks into depression. I think he is the same in relationships, no problem getting girlfriends but again self-sabotage is his biggest problem. He has lived away from home for a few years but is back again and often needs emotional support or just someone to let off steam to. He finds life tough going and every day is a bit of a struggle.

I'm an adult child diagnosed with Asperger's.

I'm married and have my own business, but I can only manage part-time work or else my mental health really suffers. I work around 25 hours a week on average, sometimes more for short periods.

I work with animals and not people and have zero desire to have children but overall my life appears very normal and most people don't know I have an Asperger's diagnosis.