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, you aren’t a terrible person. It’s just a thought. We all have unpleasant thoughts at times. Stop being so hard on yourself.

Thank you. I just feel like I should be grateful with how he is , compared to others , but it’s so hard to be when he’s so tormented and I can’t help him. When he was younger he was never aware and he wasn’t this sad and upset - he was just him in his own little world and happy and he was safe and now I feel like I don’t know how to keep him mentally safe anymore .

Not a terrible person at all for wishing your child's life was easier and the world was easier for them to navigate.

Mine is much younger (primary school age) and as yet is wonderfully oblivious that he is any different to his peers. I hope that does continue for him.

No you’re not at all. I’ve a cousin with a disability like this and her mother often laments that she is too aware of her differences compared to some of the higher needs kids in her school.

It is so perfectly normal for all of us to want our kids to be happy.

You are not terrible. Autism can be so hard. I have two, both younger than yours and while I think one of them will grow and flourish and live a good life on their own terms I can't currently see how the other will manage it.

This is why level 1 autism is no longer referred to as high functioning - just because people don’t require a lot of support doesn’t mean they are ‘functioning’ better than someone with much higher needs. I’m really sorry you and your son are going through this, has he had any therapy?

A terrible mother for wishing your son had an easier road than the one laid out for him? I think that’s all any mother wishes. Be gentle on yourself.

You are not a horrible person.

I would bet every parent of a child with a disability or life altering medical condition, myself included, has wished at some point or another that their child’s life could be easier.

That’s all I’m seeing from your post. You love your son, and seeing him struggle must be incredibly hard. Like any parent, wishing you could take away that struggle is normal I think.

I've one autistic enough to be mostly unaware of his differences (in a special school now) and one who isn't who struggles in mainstream struggles with friendship struggles with personal care everything is prompted even now he should have taken his meds the alarm reminder went off he muted it and forgot all about it I've got to go in and remind him again

Not terrible at all. My son is only 11 but this year has really realised just how different he is, to the point he had a bit of breakdown and tried to harm himself. After lots of time with the crisis team and a reduced school timetable he told me last week he is actually enjoying his life again and accepts himself but I know that could change at any time (especially as he will be moving to an SEMH school in September and he hated the idea as it made him feel even more 'different')

This is why people say high and low needs can be damaging in diagnosis, the world may see a low needs child / adult but whats going in for them is so difficult

I feel exactly the same. My son has just turned 18, and though very very intelligent, he’s also very autistic. Has no friends, no interest in having any. Severe anxiety and depression which he’s on meds for now and going to CBT thankfully! Games all day and all night, dropped out of his alevels due to anxiety, supposed to be finishing them in September but we will see. Can’t work a part time job as he won’t leave his room, can’t handle noise, or people in general. Is getting extremely overweight as he uses food as a sensory need. I have tried everything possible to help him. It’s driven my to my knees. I get very little love back from him. He’s not got much empathy unless for animals. I feel like I put all my love, time and energy into him and I may as well love a brick wall. I know it’s terrible to say but sometimes I wish he wasn’t as intelligent and everything that goes with it because he would be easier to love and I would be less hurt at the constant rejection from him. I feel like there isn’t much hope for the future and I never thought I’d say this when he was younger but it’s gotten so much harder as he’s got older. He was a loving little boy. He’s still my everything but it’s absolutely the hardest most unrewarding job I have ever done with no end in sight.
I feel for you OP, you are not alone.

Are there no other teenagers with autism at college? Mostly in high school they tend to cone together ime.

As others have said be gentle on yourself.

I must be so difficult watching your son struggle. You sound like a brilliant mum. Your son is very lucky to have you.

You're not a terrible person at all. If I've understood correctly you're not saying Autistic people with higher support needs have it 'easier' in general. Just that in your sons case a lot of his distress comes from awareness of his own limitations, so that one aspect of his life would be easier if he was less able to comprehend his own difficulties although it would be harder in other ways. Nothing terrible about that, we all have thoughts we wouldn't necessarily say out loud.

Not terrible at all. DS1 is highly intelligent, fully verbal and theoretically independent with self care (although this is such a demand, he often needs a lot of help). Despite this, his emotional/social needs are through the roof. He’s only primary aged but I absolutely cannot see him managing in a mainstream secondary, or in a ‘normal’ life, despite his raw IQ being higher than everyone else in the family.

It’s hard. And it’s been a fight the whole way because his needs aren’t so obvious.

Not terrible at all. I worked with children with autism to varying degrees and in honesty, it was often the higher functioning children I found myself feeling most distressed for. It was heartbreaking seeing their awareness of their differences to their peers - wanting the same experiences, but often finding that they were just beyond their reach. Whereas the children with very high level needs and associated learning difficulties did not seem to have this awareness of their difference, or distress at being othered. I remember one mother who had two autistic children - one who was pre-verbal with significant learning difficulties and challenging behaviours, and one who was high functioning and in mainstream school but with terrible mental health. It was her higher functioning son she wept most for - he knew he was different and yearned not to be.

You are not terrible. It must be really hard to see him unhappy.

I have two DS with very significant needs- non verbal, incontinence. They will never be independent. Generally they are happy but it is at vast expense of my life and my husband’s.

My dark thoughts are definitely what will happen once we die and sometimes even wishing we had never had children.

I have 4 boys on the spectrum at varying degrees. My 7 year old is severely disabled and will be reliant on us for the rest of our lives, and then my children are left with the responsibility of his care. The thought of leaving him alone in this world haunts me, me not being here and him missing me and not understanding 💔 My other boys will live independently. Believe me, you do not have the short straw. I'm not taking away from your worries and your sons struggles, but please don't think that my spoon fed, non verbal child in nappies is the better end of autism. I would give everything I own, and more, to hear his voice and have a conversation with him.

I grew up with a relative with severe learning difficulties. The extent of his needs was unequivocal. The state provided appropriate "education" and then residential care (to a better standard than families get post-2010).

He had a happy youth. He was at school with peers and lived with peers. It was a small, content world with no deep thinking. He did struggle in later life after a couple of close bereavements, and like many of his peers, aged rapidly.

I have a "high functioning" teenager. Fortunately to this point, he's not too bothered about his differences or excessively affected by anxiety...

I can see that being aware of your differences but not having the neural development to adjust around them is a particularly cruel trick of nature and incredibly difficult for a parent observing with limited means to mitigate them (before we even start on appropriate education, employment and support)

OP your 14 years ahead of me in your autism journey, how your feeling is normal I think. You sound like a wonderful, hands on loving mum. I don’t have any advice or comforting words but I hope someone comes along soon with some advice or support for you both. I understand and do recognise how hard it is trying to navigate such a busy and overwhelming world with a complex brain. It’s something I’m learning more and more about in my time raising my autistic DC too.

You are not a terrible person. DD1 is 19, has ASD and LDs, and she's probably functioning around 7-8 year old level in some areas, 5 years old in others. She is painfully aware that she should be driving, that she should have a job, that she should be going out with friends, that she should be planning a future. She can't cope with even a level 1 course because she has to mix with other people. She just can't do it. We've had 3 failed college placements, and we're waiting on the next steps for her EHCP. She will never be independent. She has too much impulsivity and not enough sense of danger.

If she was just a little bit more disabled cognitively, she'd be happily bobbing around in her bubble, loving life. As she is, she's tortured - aware of what she should be doing but completely unable to do it.

I have a relative very similar. He so desperately wants to be ‘normal’ and just have the same problems as everyone else. I worry a lot for him as he is just so unhappy. I wish that the future holds happiness and stability for him. I totally get what you’re saying about their awareness of it all making it so much harder mentally

I feel exactly the same OP, so don’t think you’re unreasonable at all.

On the outside, people would assume my DD is a regular teen, but it’s increasingly obvious she’s never going to live a ‘normal’ life unless she has lots of support - from me.

She messages me every morning to say she’s awake, can’t make any decisions for herself - what should I have for lunch? What should I have for tea? What should I wear? Then argues against anything I suggest, has violent meltdowns where she screams and smashes things. This is all behind closed doors. We’re all scared of her.

She does have a part time job & does really well there, although sometimes colleagues take advantage of her and are mean. I also need to take her to and from work - she won’t get public transport or taxis. If she finishes at 6, she needs picked up at 6. She can’t cope with someone arriving at ten past, or five to. She needs my help composing text messages as she ties herself in knots over if it’s the right thing to say. She blames me every single time something doesn’t go her way.

She tells me she hates her life. She cries because she has no friends and longs to fit in. She was bullied horrifically all through school and still people make fun of her. I worry she’ll end up in an abusive relationship, as she’s very naive and trusting.

When I’m not with her she bombards me with constant messages - the cat is meowing, how long will you be? I can’t find my grey jumper.

I can leave her alone, but not with her siblings because she lashes out at them.

I saw a quote on social media ‘Asperger’s: too weird to be normal, too normal to be weird’ (I know this is highly offensive - lots of people posted in the comments arguing against it. I apologise if it offends anyone. However, it sums up my daughter perfectly).

I have often wondered if things would be easier for her and me if she was ‘more’ autistic. There’s a local charity that meets up weekly and organises activities for autistic girls, but there’s no way she’d go. To be fair, she doesn’t look or behave like the other girls in the group (I work with them sometimes), but in many ways she struggles more than them.

I don’t think it helps that she wasn’t diagnosed until she was 11 and she wanted to keep her diagnosis private. She isn’t open about it and has never said it to me out loud.

I have no idea how she’ll cope when I’m no longer here. She doesn’t get any support from anyone other than me.

No, it's not a terrible thought. You are wanting to make life easier for your son in the long term.

I have an ND son, autism diagnosis and on the waiting list for an ADHD diagnosis. He is 22, so a bit further on from your son.

I used to hate him going out on his own, especially at night. He thought he was so street wise, but of course he wasn't. He was brought home once by the police as they found him wandering, drunk, on a main road. Another time we had to pick him up from A&E. He was also relieved of money and personal items by so-called friends. I have cried for the way he has been treated a few times.

My son was keen to have his diagnosis (was 20 when diagnosed) as he knew he was different and wanted to be able to explain why. He had decided a few years ago he was autistic, and would tell people he was, even though he hadn't been diagnosed at that point.

I didn't think he would ever get a job. He hadn't coped in school or college so missed a lot and had no qualifications at all.

However, he has a night shift job which he likes as he doesn't work with too many people and the work is pretty much the same every shift.

My suggestion is don't dwell too much on what might be. Things often work out in unexpected ways.

Carry on living and supporting your boy, it what he needs right now. 💐