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. 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 op, you are a loving mother who cares about her ds.

I just want to thank everyone for the messages and the very personal stories you have shared . It is nice to know I am not alone but it is also sad to know so may are suffering.

I have had a “ feeling sorry for myself” night tonight and was feeling very upset when posting. Reading the messages has really helped me.

I am drained right now so I don’t want to start replying individually and not managing to reply to all , so I will come back tomorrow and reply as I really appreciate that so many of you have shared really personal things .

Thank you and love to all of you ❤️

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.

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'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 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 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.

Just described my eldest to me :(

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.

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

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.

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.

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.

Of course you are not horrible
I have similar problem my dd is 13 and functioning academically as a year 1 pupil but is painfully aware of how different she is from her peers

she can pass as a typical child and others who know her are surprised at her level of difficulty and issues at home as they only see a small part of who she us

yes it would hurt her and us less if she was entirely and globally SeN and unaware if her
“ failings”

Oh gosh OP, I read your post and really empathised. I have a family member who is very similar to your DS and it is truly heartbreaking.

It's hard to articulate the grey area that lots of people like your son and my relative find themselves. Stuck between two worlds where they can't function as adults and live regular lives but are also far too aware and capable to be treated as severely disabled. It is so tough! My relative watched their siblings overtake them and live full adult lives with careers and families, whilst he has stayed in a strange kind of limbo. Unable to drive, maintain a healthy relationship or work. He is resentful and bitter about everything he feels he should have that he hasn't got.

In my view it also isn't helped by some of messaging and education that is given to people in this grey area. A focus on rights and independence which is all well and good except what happens when the independence they crave isn't quite within their grasp? They actually need help and support to perform basic functions, manage their money and keep healthy and well. The state simply doesn't have the resources to help disabled people manage these rights appropriately and so much falls onto the family who are completely disempowered.

OP, I have a Ds of 20 and a Dd of 17. Both Autistic. My Ds is verbal & hugely intelligent. Diagnosed aged 14 but got NO help. Apalling local GP says he doesn't 'look Autistic'. Badly bullied all his life. Struggles with comms, afraid of authority, currently struggling to come out of his room. I don't see him living independently. My Dd 'looks Autistic', has had more support at school. Is applying to College to train for a very stressful career. I will of course support her but I think her chances are slim to zero. Both are very aware of, and very upset by their difficulties. So called 'high functioning' Autism as 'a superpower' is not the case for them at all. However, I have a cousin with a big strong lad of 14 who cannot go outside without 'reins' (he's a runner with no vehicular awareness) and who struggles socially as he has little idea of not undressing/ licking things in public. His parents get a lot of family support and some state support (I get neither) but I can't imagine how hard that must be for them. However, the lad himself is largely content as he is unaware of the extent of his difficulties so, unlike my two there is no MH to manage. That is the hardest bit for me.

Yanbu my daughter is only 7 but I feel there is no place for her. She is in mainstream school because the children in the Autism Class in her school would have limited verbal capabilities and would have very high support needs. But she finds the classroom really hard at times and has never been asked on a playdate or played with anyone outside school.

She finds team sports hard but we brought her to a sports group for children with additional needs and she didn't fit in either .

She gets so upset at different situations and then berates herself for being upset. She has so much self awareness about her difficulties which causes further upset ..
My heart breaks for the future for her

You sound like my friend. Her son is 30 and lives at home with her. He resents it and wants to move out but has no understanding of how to run a home or pay bills - he would just live in mouldering squalor.He has no friends and talks (monologues) constantly on his particular interest of the moment and it's taking a really hard toll on her mental health. She loves him dearly but struggles with the fact that he tells her what he WANTS to do but she knows it would be impossible for him.

He drives and has his own car but could never work (needs constant supervision) although he volunteers. I am her only close friend so I hear all her frustrations and all I can do is reassure her that she's doing the best she can for him, as you are for your son.

It’s natural to want your child to be happy OP and you’re stuck between a rock and a hard place because although he wants independence, it’s difficult because you know that’s unlikely. It may be in a few years he meets someone and they do end up living together but it’s hard nit knowing.

What kind of support is there for young adults with these needs if for example, their parents passed away? Who would look after them and help them? How are they supported financially if they can’t work?

That’s such a hard situation for your friend and her son. If he can’t work, where does he get money to run his car etc? Hopefully the government help and he’s entitled to financial assistance? This is what worries me about the reforms in benefits, I’m concerned it’s people like this that will be punished. It’s so sad.

I am in a sort of similar situation with my dd17. She is autistic but you would not know unless you really got to know her. she is and always has been in mainstream school she struggles socially and finds school environment overwhelming., She is honest about her autism with her peers but at the same time doesn't seem to be able to relate to other autistic young people and says they are "too autistic". Her main issues are social. She tries so hard to make friends, maintain friendships but it is always a struggle and this gets her down massively. She is great though at giving everything a go. Is active in sport, has worked in part-time jobs, babysits and does socialise outside the home. No issue making her way around our city on her own and I dp think she will e able to live independently with a bit of support from me particularly around keeping her place clean and tidy. The issues she has are so subtle not many would notice but as her parent we see how much she struggles and how much everything takes out of her. She will have her final school exams next year and although she is bright she will struggle with them as she is also dyslexic and her processing is slow. She has such great ambitions for herself but the system does not suit her. I have two other dds (15, 13) and they are popular, bright, sporty clever so my dd17 is always comparing her life to theirs and how easy they seem to have it. She often wishes she was "normal" and hates being "weird". it is tough. As they say you are only as happy as your least happy child and I find that so true in my case.

I have a severely autistic learning disabled older teenager and I understand what you are saying. With the right support around him my son is largely happy and he has no desire to be like other people.

I think all loving parents wish their children's lives could be easier. Whatever form that takes. Don't be hard on yourself.

It is perfectly natural to not want our children to feel pain and to compare with others. However to think that people with severe learning disabilities and autism are blissfully unaware and happy is a mistake. My son is severely disabled and on the outside can appear a very happy little boy. However any changes in routine, places and people can leave him terrified as we can't communicate what is happening. He will bite and lash out at us and also cause injuries to himself by headbanging on hard surface and biting himself. Its heartbreaking seeing him so disregulated and terrifying to think about his future in care when we aren't around especially when you here about the abuse and neglect that can happen, he may have little understanding of the world around him but he can certainly feel fear.