Severe Autism,can we talk about it?

[That80sgirl]

My son has this and i feel its not as well known about as Autism in which people are less affected. This is not a thread to argue about how less severely autistic people are still affected in other ways ,we know this!its a thread to talk about how disabling it is and how hard life is coping with it, and how little support is available for kids on the severe end of the spectrum.

My son is completely non verbal, doubly incontinent, cannot sit still,does not understand or is able to follow instructions, needs constant 2:1 care at all times,severe sleep issues(ie goes days on a few hours a night)our family life is dictated by his condition.

The system is broken in helping families like ours,the support just isn't there.ive spoken about this before. I just wanted to create a thread to talk and share with others in the same situation. A place to vent and share.

Ps @mumsnet Dont move my thread to SN i don't need help,im asking if AIBU

BoardLikeAMirror

So you will be aware then that there will be others with very different experiences and views to yourself. Great you think your autism is mild, many , many others who don’t present like the op’s child will feel differently. They will have autism that is anything but mild and the professional support and struggles to illustrate this.

FrostyFifi

When your child has been hospitalised several times and you have wondered if they will make it to adulthood at all let alone with a lot of support there is no way in earth their autism can be described as mild.

Trying to label anybody who has autism that doesn’t present like the op’s child as having mild autism just makes the conversation ridiculous.

I am not misinformed at all. I'm a qualified professional who deals with these differences and these families every day of the working week. But thank you for your comment, even amongst professionals there is disagreement about autism and how it's classified and how we support it. Most in my profession actually don't agree with blanket approaches, but that's what support services tend to do and that's why support services are stretched beyond breaking point and there is nothing even close to adequate to support families like OP.

Why was your child hospitalised because of autism?

Mine was hospitalised due to severe anxiety. That's not autism. That's a comorbidity. They're autistic and they have severe anxiety. The first can definitely cause the other to flourish but they're also independent of one another.

Recommend 'Autistic Minds' on iPlayer for an insight as to the huge spectrum of difficulties associated with autistic disorders - for those not living with it day to day as many here are. ❤️

I don't think there is a suggestion that there are only 2 types of autism, mild and severe.
Certainly, lots of autistic people are greatly affected, and need a lot of support, but aren't severe/very severe eg incontinent, unable to communicate.
Others will have very low support needs, live independently, have professional jobs, marriages, parent well.

,@NoFux

And you point being that all are autistic but some have different needs so different terms are not needed for autism. As it's to co-mobilities which give different presentation

Yes, of course I realise that. I said that I, as an individual, seem to be in a similar position to FrostyFifi - married, degree, full-time job. I am aware those things might be impossible for others.

This. Nail on head.

Of course yanbu, OP and i say this every time a thread on how different autism can be.
How can someone who has managed to go through without support, then gainfully employed, running a home and looking after their own children only to be diagnosed late in life, be labelled autistic, same as a doubly incontinent adult, non-verbal, dependent in all ways, and has violent outburst?

It’s not right.

There should certainly be an recognised difference and a diagnosis to show this.
The problem is parents advocating for their profoundly autistic children, seems to be second class citizens when it comes to their views being listened to in the debate. Autistic individuals who are able to speak for themselves seem to get their own way.

There will always be some who will straddle the line we choose to differentiate with and will end up on the ‘wrong’ side but that would be better than the current system, surely

I do think using support needs rather than high/low severe/mild is a better way to move forward as long as that is also recognised as being something fluid and regularly reassessed to ensure that support is right.

when Ds was first diagnosed compared to his peers his support needs where lowish but now at 13 his support needs are much higher and as it stands at the moment he won’t be able to live independently

The irony is that black and white thinking, finding it very difficult to accept grey areas is a very autistic style of thinking.

I do think that autistic adults in the ‘no such thing as mild/severe’ camp in the cause of being better understood, have made it very hard for those more affected but without a voice, to be heard.

There’s a programme on television at the moment called ‘Inside my autistic mind’. I haven’t watched, but I believe it is presented and strongly influenced by Chris Packham, who ‘is’ autistic. The rubric says that ‘during the programme he is helping a comedian connect with her mother’.

This man is a television presenter, a position which is highly desirable, remunerative, and competitive. He hosts cruises to let the passengers observe wildlife ( a bit dodgy for an environmental activist, but that’s another story). If one of his interviewees is a ‘comedian’ , they must be verbal, continent , able to abide by a least some social norms.

How on earth does this guy get to be categorised with OP’s child? I have no skin in this game, except as a person who is interested in and concerned with the ways that society can and should function. But ‘ labels ‘ are important, because they help people like me know what is happening, and try to think about how society can accommodate and care for people.

Thank you for this thread, it has given me a lot to think about. I wish I could do something to lighten your load, OP.

I have worked with adults with autism and have worked with people on both ends of the spectrum, i always wondered how parents of the lower functioning people managed. Then i had a child of my own, who i would say falls somewhere in the lower-middle of the spectrum, and i take my hat off to you all even more. The support is not there at all for you or your children.

My ds is currently in main stream primary school but for how much longer I don't know. He has ASD, ADHD, dyspraxia, tics and a processing delay. He sleeps very little, has physical outbursts at home, is extremely verbal (this is exhausting in a whole other way) but his level of understanding does not match. We can't go out as a family unless my husband or another adult is with us as he will abscond, he had no sense of danger although can repeat back all the dangers you point out, we have to keep the front door and windows locked, all kitchen appliances have to be unplugged when not in use as he is unsafe. He cannot be left unsupervised for any period of time. People we meet would have no idea of our struggles because they just see a bubbly, happy child who doesnt understand boundaries and its unacceptable to stroke strangers. I don't ever see a future where he will manage to live independently. But whilst his autism affects not only him but those people around him it is not as debilitating as OP's child.

Autism has become largely an umbrella term, and individual needs definitely need to be considered more and whilst i do agree that all people with autism have SOME similar struggles, the level of it is extremely different.

I do think that autistic adults in the ‘no such thing as mild/severe’ camp in the cause of being better understood, have made it very hard for those more affected but without a voice, to be heard.

I absolutely agree with this, and with some parents of autistic children who would once have been termed "high functioning" stamping their feet and shouting over the parents of "low functioning" children they'd rather not be associated with. I see a lot of that. They're adamant that because their child is autistic they need this and that and they won't abide functioning levels or discussions around levels of support, because autism is autism- but then they won't see themselves in the same camp as someone like OP and won't often associate with them either! Not all of them, of course, and I'm not saying these families don't need support, but families of children with an autism diagnosis and with very severe difficulties and high support needs are ridden over roughshod by individuals who technically have or support the same diagnosis yet have much a lesser need for crucial services. I have personally seen someone with exceptionally high care needs not able to access a service because it's been taken up by individuals with quite low support needs. I have spoken with parents who don't think a profoundly autistic youngster should attend the autism friendly screenings of a film because their presence was affecting their families enjoyment and surely there was a screening time for people like them, so that people who could enjoy a film get to have their family time?

It beggars belief. And I get that a lot of people on here have only their own experience to go by but I have heard the voices and seen the experiences of hundreds and there is a definite theme!

OP is absolutely not wrong in what they're saying, not unreasonable and deserves the support and is entitled to the space and their voice to say how they see the situation and that they're struggling and need help they're not getting.

We went to a autism screening of a Christmas theatre show and my daughter was only one at severe end and she does shout random words. She was also standing on chair we was at back so not effecting anyones view. Not all time but will randomly. I had so many tuts and stares during the performance, It was so upsetting.

Yanbu and my heart really goes out to you. I count myself as one of the very lucky ones as I have the non verbal child who proved her dr wrong and at nearly 5 learned to talk (still has significant issues but being female (who often are less physically affected re violence though I have the scars to prove she still hit out) and very intelligent we have found workarounds). We still have toileting issues despite her studying for her degree, doesn't seem to know she needs to go nor cares.

Sitting in a doctors office with your 3 year old being told that she won't talk, use a potty or live independently is something I'll never forget but we got very lucky. (Full independence is something I am still not convinced about but I think she will manage supported housing and part time work as she is an exceptional musician)

I just wanted to say to @That80sgirl, @MobMoll @onwardandupwards @DistractMe @WhatIsNapTime, @Middlefadiddle and the other parents in similar positions on this thread, that I see you and hear you.

You are doing something unspeakably hard, with grace and love. Our society should be lifting you up, you are extraordinary.

How old is your DD?

Im afraid you just have to learn to ignore the tuts and stares. Or stare back. They’ll end up making you feel even more drained.

Yes people need to change but life is hard enough looking after s disabled DC without letting peoples reactions bother you too. I know it’s easier said that done but practise it enough and you’ll get there.

Im sorry to hear about your experience

I’m so sorry, that’s really appalling. The people who did that have really lost their way.

Dsd on the other hand is profoundly learning disabled. Her primary issue is a rare condition (so rare it's outing to name it) but drs think she is autistic too (completely separate) which complicates things, but due to her other condition it is impossible to conclusively diagnose and not particularly useful. She lives with 24/7 care in a small group setting - it takes time to find the right place for them but I highly recommend those of you with young adults at home start the process, expect it to take a year or so. If anyone needs specific advice on semi independent living care settings so pm me, also moving counties which I've just coordinated

But this is illustrating the point that @That80sgirl and others have been trying to make. Even in spaces that should be safe for them, accepting and inclusive, they are meeting with judgement and rejection from those less profoundly affected.

So sorry i missed the part that said it’s an autism screening.

Even more appalling.

NoFux

Tgat is your daughter, with us things are very much intertwined and we wouldn’t have the one without the other.

As others have said if you have met one person with autism you have met one person with autism.