Is this a horrible thought to have ( autism )

You're not a terrible person at all, and I had the exact same thought when I had a close relative suffering with dementia. She lost the ability to live independently, care for herself, keep herself safe etc. She mostly didn't know who anyone was, although she retained attachments to some of us. However, she had lucid periods where she understood exactly what was happening to her and each time she would become incredibly angry, and then horribly depressed. Obviously you like to think that if you're wishing for anything you'd like them to not have the condition at all, but after it became clear that she was not going to survive this, I used to pray that her lucid periods would just go away. They were heartbreaking for her.

Anyway I know it's not quite the same thing but just to say I feel for you and your son, and I wish you both well.

It’s not quite the same but my perspective might help OP.

I have a chronic condition where I have periods of respite before it comes to the surface again. During my times of respite I have a glimpse of what ‘normality’ is like, I.e what it would be like to have a life that doesn’t involve my health condition, and although that glimpse is lovely it makes life so hard when my condition suddenly flares up again. I’m then back at Square 1 all over again, I crash back down to earth, I realise I will never have the life that others do and my emotional state really deteriorates.

My health condition is relatively common and so many people suffer with it 100 times worse than me and their life is affected by it daily and quite significantly, and as awful as it sounds, sometimes I feel jealous of them. The way their condition affects them doesn’t allow them any respite and they don’t know what it’s like to feel the heartbreak going back to Square 1 over and over and over again, and instead they just have acceptance of how their life is and they make the absolute best of it. Sometimes I feel like although their condition affects them more than it does me, they still live a happier and more fulfilled life than me.

My life is a constant battle of hope (when I have glimmers of normality) followed by depression, disparity and painful disappointment when I’m back at Square 1 again. There is no stability to my life. I can go months and months of feeling like I’m normal and just like everyone else, but I spend my days in fear, like a sitting duck just waiting for it all to crash down around me again.

My condition is currently more stable than it used to be, but in some ways my life was better when things were worse because I accepted what my life was and I made peace with the restrictions I had on my life. Life was consistent and I didn't know any different.

Now though, it’s just a roller coaster of ups and downs, desperately wanting to be normal like everyone else, being allowed occasional glimpse of it, and then having it snatched away from me again.

I probably feel awful for feeling like this in the same way you feel awful for the thought processes you have about your son. We aren’t awful people though, we are just struggling to cope with the realities of having to live with unpredictable health conditions (I.e your experience of watching your son’s life pan out), and with that comes really difficult and confusing emotions.

My dd is the same age. I won’t say she’s more severely autistic but there are things your ds can do that she can’t, such as go out on her own. Dd is in specialist provision (very small setting). She does work experience once a week at a cafe. Dd isn’t very verbal and can often refuse to do what’s asked of her, work experience hasn’t been easy and I’m unsure if she will ever have a job without having another adult support her (she has TA go with her). She will probably never live independently without 24 hour care in place but it will be hard to get this care in place because she’s kind of on that line of (would she be ok to left for a short time or not?). Dd doesn’t verbalise her needs, she doesn’t use a phone, can take things from shops and can eat things that are dangerous to eat but to others she can appear a lot more capable. When I see her in her setting I feel grateful that she’s not as severely autistic as some but there are also students that are also a lot less severe than she is and I wish she was like that. I wish she could live more independently in a sheltered housing type place or in a shared house, maybe one day it will happen, but the chances are small.

My dd is amazing and I love her dearly but I’ve spent the past 19 years (11 of those alone) caring for her, it been exhausting and getting SS to find her any kind of supported living isn’t looking likely. I worry for her future and mine.

You wish you could lessen the suffering of a person you love. That's completely understandable. My heart goes out to you both.

Thank you for posting this @Marigoldsold You've voiced how I'm feeling and I'm glad I'm not alone. My DS is 18, can wash, dress, cook, etc (all with a lot of prompting and reminding) but cannot speak to people. He managed a term at uni actually living away from home, without speaking to a single person (got up in the middle of the night to use the kitchen when nobody was there, sat on his own in lectures, used self checkout at the supermarket, etc). He got really depressed and has come home now, but he's beating himself up saying he should be able to do it because everyone else can.

Just described my eldest to me :(

I think your son is very lucky to have you. Please don’t feel bad OP. This is very very hard what you have described. And for so many others on this thread too. I wish there was more support for children and for parents.

I understand where you are coming from, OP, and don’t judge you for saying / thinking it.

As for whether or not it would be “better”….possibly. Probably not.

You know that saying about if we could all throw our troubles into a big pile and see everybody else’s, we would all want our own back.

It’s hard, and you’re allowed to say it’s hard.

I'm AuDHD and considered very/highly intelligent (I hate that I sound 'boast-y'), but am painfully aware of my own limitations due in part to Autism and ADHD and...I fucking hate myself for not having reached my potential.
I don't think you're horrible at all.

I could have written a similar message OP. It's tough dealing with an unhappy child and their distress and then managing your own mental health. I would love a support group for parents in this situation.

I am autistic and have had this thought. I am quite capable of seeing the extent of my deficiencies and limitations, but not able to stop them.

No op, you are a loving mother who cares about her ds.

No. Your not a terrible parent, as long as you don't share that thought with your DS. I do wonder why you don't think that you would rather he didn't have any support needs though? Wouldn't that be better that having more severe needs? I work with Autistic people and not all those with high support needs are happy, some have severe behaviour issues, some are dosed up on anti-psychotics. They also have the worst health outcomes and are more vulnerable to abuse as they can't protect themselves and unfortunately some carers aren't good people.

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. 💐

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.

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

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.

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.

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)

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.

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.

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.

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.

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.