Is this a horrible thought to have ( autism )

[Marigoldsold]

My child is autistic. He is 19.

He on one hand has quite significant needs - more socially really. Hard to make friends , can have meltdown’s that are quite hard on them- can verge on aggressive ( not to other people physically ) , very black and white view of the world, very naive . Get overwhelmed easy. Likes going out alone , but this is a big worry for me ( I tend to track , be around where I know he is ) . Struggles with lots of things but won’t accept help - hates his autism , sees it as a bad thing , will think of any reason why he is acting how he is so that he can say it’s not autism. Will not accept help unless I admit that others who are not autistic need the same help . I have to play off that I’m not helping him because he can’t do it , It’s because I want to etc . Struggles with friendships because he becomes obsessive and takes any ‘rejection’ ( eg not replying to a message ) to heart. Lots of things to be honest . I feel I’m constantly trying to keep him calm and happy ( struggling with mental health , starting to see a counsellor ) .

He desperately wants independence. He desperately wants a girlfriend ( although I don’t think he is ready ) he wants a job ( he could not handle being overwhelmed or being told what to do - he would take it as criticism. He’s at college so I can hold off on that for a bit .

I explain it as him having quite significant needs but being in this kind of grey area of having full awareness of it . He’s aware that he isn’t doing what others his age are , that he isn’t “ the same “ . To me he’s still like a child - maybe a 13 year old - in some aspects but in others he isn’t , he’s a 19 year old.

I work with young adults with very high level needs . I do not for a second doubt that it is not hard for them. I can’t imagine how difficult it must be for their parents. But the people I work with have no desire for independence, no thoughts of wanting to live independent or get a job etc ( they won’t in all honesty ) they are very much still like children , but I will say they are happy. Not all - some have a lot of heartbreaking issues - but some, are just so happy .

I know I am lucky in the fact that it’s likely my son will be able to live semi independently at some point - in supported living . For example he would be fine to be left alone overnight - not that I have - but if he had everything he needed , he didn’t try to use the oven etc ( which he wouldn’t ) and he didn’t have to actually do anything . So I have no doubt that one day he could live in a supported living setup with someone ( or me ) popping in to help out - manage finances , go shopping with him etc - at some point . I know the people I work with will never have that and I can’t imagine the worry of the parents for when they aren’t around so I know what I’m going to say now is something not really thought out and may seem selfish … I’m just sharing a dark thought that I can’t share with anyone in real life .

Sometimes, when he’s crying to me about being lonely and not being able to live a ‘normal’ life I think to myself …. Would it be easier if he was more severely autistic to the point he had no awareness that he was different ? So he just enjoyed day to day life , took joy in the things he liked , without worrying and being sad about pretty much just watching everyone live a life that he can’t ?

Im a terrible person aren’t I

No, not a terrible thought. You sound like a good mum to even be worrying about him so much. We all wish what we wish to make our children's lives the best they can be.

Totally normal. I have a disabled autistic sibling. For many decades they could just about cope, catching buses, microwaving food, doing a menial job for a few hours a week. But they were always unhappy and frustrated. When our mum died they had several strokes and deteriorated ‘enough’ to be placed in a home with other disabled people. Things are so much better now. They are happy and content with their world, despite being significantly more disabled.

He's on all the disability benefits. She has also worried about cuts in benefits, but honestly one conversation with him and you'd know that he's not able to work in paid employment. In order to work he would need at least two people with him all the time to tell him what to do and when to do it and in what order, and to prevent him from just wandering off to do his own thing whenever he felt like it. So employment, unless specifically tailored for autistic people, would never be financially viable.

She's also worried about what will happen to him when she's gone. She's in her seventies now and he will inherit the house and any money but he won't have the first idea how to keep the house maintained (he won't have people in the house, she has to time any house maintainance for when he's out or he has a complete meltdown). So that's another worry.

She talks to me about it because I have an autistic DD, but my DD is much higher functioning so I find it hard to advise her.

You just want your son to be happier and his life easier. Of course more severe ASD might not equate to those things - he could be much more violent including towards yourself, have more severe meltdowns, self harm very badly etc.

To be honest I would just give him as much help as possible and break everything down into as small parts as possible - and tell him that happens for all teenagers if that helps him accept it. Lots of teens need teaching how to use a washing machine, how to boil an egg, how to use public transport, he might need smaller steps but lots of teens need some help/support with different things.

I would also encourage him to learn as many everyday things as possible and keep it as simple as possible - ds knows clothes go on at 40 degrees in the washing machine. He has no white clothes so the washing machine stays on 40 and just he puts any clothes in, shuts the door and presses start. He now 'knows' how to use a washing machine. I put 'shuts the door' in as although this is screamingly obvious to most people DS would need this step telling to him or he may be very literal and put his clothes in and press start assuming the machine will automatically shut the door!

I'd avoid putting any issues he has down to his autism for now as he already sees it as a very negative thing and is still obviously really struggling with the fact he has it and the impact it has on him. Maybe try making it an age thing instead 'Oh I really found that hard at your age, here's what I did about it,,,,,' He might find that easier to accept.

Things like 'being a teen is a really tough stage' and 'we now know that people don't have a fully developed brain until at least 25' might help a bit. Also perhaps use stories from you being young to help him feel more 'normal' ie you had a similar friendship issue to him and what you learnt from it and what it made you realise. If you have a true story great, if not then I'd make one up, to me it's like a more adult version of social stories for younger kids with ASD.

His emotional age probably is much younger than he is - 3 years is fairly common I think in those with what would have previously been diagnosed with Aspergers (ie autism without a learning disability). I see it in DS (18), he is very academic though which thankfully has allowed him to see his autism in a somewhat positive light.

Is his dad around? Is his dad autistic/ND? Just wondering because there's a strong genetic link so there's a good chance he has other ND relatives who might be able to make him feel more positive. He might find that he bonds better with other ND people too, DS only had one 'sort of' friend through secondary school and he was also ND (severely dyslexic).

You say he's currently at college and is going to really struggle with work - is there somewhere relevant that he could volunteer for a few hours a week? Volunteering is generally a lot less pressured, less hours, good on your cv and might increase his confidence. If you think it's possible then it might be really helpful to him. Good luck! I hope he finds his tribe and is able to navigate his way to the independent life he'd like.

I think it is hard to think of DC as severely impacted when of average intelligence unless we consider autism as a wheel in which some DC score 10/10 in different areas but are equally impacted in terms of ability to live independently. Unfortunately this does not relate to state support.

There is little to no state support for autistic individuals who score 10/10 for anxiety who can’t function because they can’t use devices or speak to another person and can’t leave the house but can microwave a precooked meal if the only person they can speak to procures it.

Take me out of the equation and my son starves to death. My son has said when I die he will kill himself. I am only 59 but spend inordinate amounts of time to ensure his life is stable when I die, he is sole proprietor of the house, I have set up direct debits for all bills, as I age there will be cleaners and gardeners with a key box paid by DD etc.

So the functional can be taken care of but he hates his life and hates that he is autistic. He rails against his diagnosis and says he rather be schizophrenic or a heroin addict. Once I am gone there will be no family dog he can cuddle, no special meals or treats, no routine shared crap TV. No one to manage day to day stresses and carve out time to enjoy the little things to distract from the inability to leave the house, no friends, no job, no relationship and little hope of ever having those things.

I would much rather he was less cognitively aware and able to access a supportive living environment with opportunities to work or otherwise engage with the wider community.

Thank you for your reply. I feel like I will be your friend in a few years down the line only I can’t imagine my DC will ever drive. I worry so much what support there will be for him as it’s unlikely he’ll be able to work and be independent for the exact reasons you describe. I’m pleased the financial support is available (for now, I just hope the cuts don’t impact children like this)

Are you sure he couldn’t access supported living? As you say, if you weren’t there what the heck would happen, would they leave him to struggle on?

He basically can’t function without you so surely there is something for him if you weren’t here? It’s absolute tragic to think he’d be left… I can’t believe the state don’t need to step in.

No you are not unreasonable. Your situation is difficult but in a different way. I often wish though that my very severely autistic non verbal children were able to talk to me.

I think you are unrealistic and wearing rose coloured spectacles about the awareness and difficulties faced by those more severely affected.

My non-verbal son lost everything that made his life good and everything that was important to him as a direct result of the severity of his condition. He has experienced significant trauma as a result of his condition & the way services treated him. People like him can be sectioned without a mental health condition - and often are for years. Accessing any medical treatment remains a challenge. Five years of battle with medics for a blood test. Last time we were in A&E they wanted to DNR him. He had an entirely treatable condition (once we managed to persuade doctors to blood test him rather than DNR him).

So yes, be concerned about the impact your son’s autism has on his life, but I wouldn’t envy those who have more significant needs. I also wouldn’t underestimate their awareness. I remember years ago when my son was small he was trying to communicate something. I was struggling and said out loud ‘oh ds1 it would be so much easier if you could talk’. He cried and cried and cried. I stopped underestimating his understanding from that moment.

thwyre your thoughts, borne of your experience, and perfectly justifiable. There is no invisible judge. Your son has his struggles and you’re wondering if he was less aware of him if he’d be happier? Some might say wouldn’t we all! Its an ordinary though OP don’t beat yourself up

You are not unreasonable at all.
i understand

All of the peers he is comparing himself to wouldn’t be able to live the way he was living.

I think maybe pointing out that others would never do what he did and like him if they did live like that they would have given up too

Its like crossing the Atlantic

If you set off swimming you would fail. Then comparing yourself to others who have taken a cruise ship and saying if they can do it why can’t I

His peers don’t do everything by themselves, because they don’t isolate themselves they can ask for help or give help. It’s like having the cruise ship to get themselves to the end of their course

Just to give you some hope, he will probably become more self aware and accepting of being autistic as he gets older, based on my experience with family members.
It's more difficult than people realise to see loved ones struggle so much with trying to get on in life, but not being able to cope the same as others.
It's a hard journey for you both, keep reminding him it's OK to need more down time, etc and more help in certain areas.