Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

Yes. I have level 2 support needs that when I get that support it makes me look like I have "just" level 1 support needs. But there are people here who shit on people who have level 1 or 2 support needs because there are other people with level 3 support need who are not getting the support they need.

Everyone deserves to get the support they need, but very few get it. At any level. There is a reason why there is such a high suicide rate among autistic people.

@Sindonym I’m talking about volume of diagnoses rather than an individual diagnosis.

I am still undecided on this. I can see that there are some people with autism who are severely affected, all of the time in every area of impairment and they need round the clock care, and there should be a quick way to explain that. I also see there are people who are holding down jobs, married and although impacted by their disability, they only need minor adaptions and support to be part of society. But my son appears to be neither of those categories. So i dont know where it leaves him. His sensory issues are as severe as anyones, particularly his vestibular and proprioception. So he spins, flaps, headbangs in really inappropriate and dangerous places. he has no sense of danger so has 2 to 1 support in a special school. He is at a year 2 level of learning, in year 8. But he can talk and use a toilet. I know non verbal children with higher attaintment and less sensory issues as well as non verbal children who have similar sensory isdues and lower attainment. I just think trying to put people in neat boxes of severity is very difficult especially until after puberty. When i looked up aspergers and asd, the criteria were the same but the only difference was early language aquisition and you had to have a normal iq for aspergers, but with asd you could have any iq. It also said that some non verbal children would later develop a lot of useful speech and some children with aspergers would never develop beyond unusual speech.

Gosh it’s complicated isn’t it? I’m Level 1 and have never received any support, not eligible for PIP. Now 50 and don’t have communication problems anymore.

The problem for me is that I have a few days or a week of functioning very well within my routine but there’s no time left to make any money. Then every few days it all falls apart, I fall behind with housework and don’t brush my teeth. This can last between two days and a week and then it’s two days to catch up. But I’m well dressed and smiley so people don’t realise. The anxiety and constant mental torment isn’t seen.

If I didn’t have help from my mum I’d be in a very vulnerable position because my benefits will stop this year when my son finishes his A levels. And I know from bitter experience that I’d have a queue of men trying to take advantage of this situation (I look very young and I’m pretty). My mum is having to leave me her house so that I don’t end up homeless.

I do actually think the autism spectrum covers too many conditions but what I’m trying to say is that a more functional person things can be worse in that we’re expected to cope in a society that isn’t designed for us. I’ve applied for PIP twice but they just say that as I can wash, dress and answer their questions unprompted I’m not eligible. I’m physically very fragile from the stress of it all and I have seen other ND friends become physically disabled from stress and past abuse. Im a stubborn old thing so I’m just about still going!

I have 3 with autism OP- sorry I’ve not read all your responses. My eldest has passed her 11+ (a thing where we live) and my youngest is non-verbal and sounds very similar to your son. I understand what you mean but they all have their struggles- albeit in different ways. I do think that the think my eldest on paper is seen the same as my son is a little bizarre. His needs are massively higher.

Actually the spectrum being so broad does concern me. My eldest dc is diagnosed with autism but is verbal however needs lots of support in and out of school and far more than most kids his age need. His behaviour is very challenging and he has a huge amount of sensory processing difficulties. He was very quickly diagnosed after referral. It was very obvious from a young age.

My middle dc does very well in school, has no support at all and doesn’t need any, has no sensory processing difficulties, no social, communication or behaviour difficulties and has never had a meltdown in or out of school but yet the school want to refer him for testing. I have questioned it and asked for reasons why in writing as neither me or dh or anyone that knows him well understands why. I honestly partly wonder if it’s became dc1 is diagnosed and it’s known to run in families (definitely does in dh family). The reasons given when discussed just seemed so trivial and he has some very minor signs he might be on the spectrum. If he does need tested I will refer him but I really don’t think he does so have asked for further details before agreeing.

It actually concerned me them wanting to refer him because I feel if schools are referring kids with no real key indicators like DC2 for testing it makes the waitlist much longer for families dealing with needs like dc1 has. This in turn makes it much harder to get the diagnosis and support needed. I know how mentally, physically and emotionally exhausting it is raising a child with lots of extra support needs and families need all the help and support they can get so putting kids on assessment waitlists without clear reasons why is a big no to me.

@Spendonsend

I just think trying to put people in neat boxes of severity is very difficult especially until after puberty.

This is the other problem with categories. Peoples change. I never imagined in a million years my little boy would be able to live an independent life. All through nursery and primary school he struggled and showed us a child who had very little understanding of what was going on around him. He went to a mainstream high school, heavily supported and without 6 months the majority of support had been withdrawn as he literally changed into another person. He is now at uni (lives at home) but absolutely capable of living his life with minimal support. He would have been put into the 'severe/profound' box had he been assessed as a 3/4 year old. DD was the opposite and needs more support then ever now.

The ever changing needs of people makes this very difficult to do.

I do not see why you can not just say you would like more support without inferring that others, who you do not know and have no experience of, do not need support. It really should not be a game of top trumps but rather those who need support get appropriate support. And I know I am naive in thinking this will ever happen but I can dream.

I agree with this. I know at least 2 girls whose struggles are not getting recognised. One has quite similar sensory processing difficulties to dc1 who is diagnosed and is still not being referred and her parents have been brushed off.

But none of that is part of the diagnostic criteria for autism, is it? Someone suffering those problems may be autistic but they also have other comormidities as well.

He’s meant to have had whole exome sequencing but covid has severely delayed that as our family is complete so knowing reasons for his disability are not classed as urgent.

You may find the info from the 100,000 genome project yields information in the future as they find more markers. Our son’s geneticist says the amount of diagnosing they have been able to
do has been extraordinary. I do think knowing the gene mutation & therefore being able to find your true ‘kin’ is far more use than an autism diagnosis.

In my son’s case one of his most extraordinary features is that the ‘left’ language centres of the brain seem almost off line - intonation, gist, musicality all brilliant, grammar, precise meanings of words, vocab all pretty much non-existent. He’s clever though with snd extraordinary memory.

I wonder about SHANK3 in his case. He also has significant SIB and a loss of self reg that stated in puberty - all a bit SHANK3 like. But who knows.

a non verbal, hyper, incontinent, non eating, non sleeping child should not be in the same category as some one "who likes to tidy a lot or wash their hands lots" - for example.

Nobody is diagnosed with autism because they "like go tidy or wash their hands a lot"

Some of the comments on this thread are absolutely appalling, minimising people's disabilities. I am astonished Mumsnet have let it stand.

I know I’ve reported it.

“weird” thanks

I do agree there should be a way to differentiate.

My DD is autistic, and so is my best friend's son, but he has severe learning difficulties and she does not. You really wouldn't spend any time with them and say "that's the same disability."

Why does this argument always come up for autism specifically?

It is TOTALLY NORMAL for a diagnosis or a medical condition to encompass people with a huge range of different experiences with that diagnosis or condition.

Put ten randomly-selected people with a diagnosis of multiple sclerosis or dyslexia or Ehlers-Danlos syndrome in a room, and you'll have ten very different experiences. There will be those who could very well go through life without colleagues or acquaintances ever realising they have a condition, and those whose condition could never conceivably go unnoticed.

With autism and Asperger's, while the two diagnoses were previously treated as separate things because they could appear quite different, in reality they're very difficult to cleanly distinguish from one another for a big chunk of the people concerned. In the diagnostic manuals, the only real difference between the two conditions was whether there was speech delay.

When they looked at adults, they found that there were quite a lot who had had speech delay as children who were clinically indistinguishable from those who hadn't.

And there are so many families that have members with both Kanner-type (for want of a better word) and Asperger-type autism, as well as unaffected members, that it seems likely that underneath all these different types of experience within a family, there's something similar being passed on that comes out in different ways.

People just don't argue this for other conditions as regularly as they do for autism — that people with the same condition or diagnosis as their children, but whose difficulties are less obvious, should be given a different diagnosis. It's considered quite normal in most conditions that the same diagnosis can apply to people whose conditions affect them very differently.

Exactly. Always about autism and never the myriad of other conditions where the same applies

Is it backlash against vocal adult autistic (or sometimes dubiously self-diagnosed) online advocates and activists?

Think you've hit the nail on the head here. It's the same as many autism support groups having been entirely taken over by NT parents of autistic children who tell autistic people (many of whom also have autistic children themselves!) that they aren't autistic because they are verbal. There is some really appalling ignorance and diagnosis-denying does seem to be confined to autism specifically for some reason.

I think it's a really interesting discussion. I've seen the levels before here and there but not consistently. My formal diagnosis is moderate autism (as opposed to mild or severe). The problem with the levels is they reflect visible impact on others really.
It's me that cant save as I have no career development, have no social life, carry a huge amount of trauma elating to school etc. it's me that will lose my job soon because there has been no accommodation of my autism, meaning I'm seen as difficult or stressful. It's me that has to run every social interaction over and over to see where I went wrong, has had to pay for therapy, has suicidal ideation, has to manage sensory issues - but because I'm intelligent and can mask all of the harm and visibility is to me. Everyone else can walk away, leave me to it.

Your post literally states the way that it is differentiated: he has learning difficulties as well as autism.

TheLostGiraffe

I know it’s appalling. My diagnosis was really in-depth and gruelling. They were so kind and understanding.

The vitriol by non diagnosticians because I’m verbal and old is just awful.

You don’t get moderate, mild or severe. You just get meets the criteria/ threshold for autism as some traits may be severe and some mild.

Utterly bizarre that all of these people appear to believe they are more knowledgeable than clinicians and academics who have spent a lifetime researching and training in autism. Or that people can just "get" a diagnosis without a really thorough assessment.

The level of ignorance does at least demonstrate that their opinions are clearly worthless and irrelevant so should be ignored. But why should disabled people have to ignore this type of abuse? It wouldn't be tolerated for other protected characteristics. There seems to be a thread like this every couple of weeks.

This is a really upsetting thread. It's particularly sad to see so much ignorance from people whose dc have been diagnosed with autism.

My dd was diagnosed last year at 13 - she gave every impression of thriving at primary school, excelling academically as well as in sport and music, multiple awards at prize giving, scholarship awarded for secondary school. She was dying inside the whole time and completely fell apart in year 7, started self harming and became deeply depressed and suicidal.

I think the way people think about this reflects the wider issue of physical illness being given far greater significance than mental illness.

This is people not seeming to understand what a "spectrum" is. It's not called "autism linear graph disorder" is it? 🤣

Just baffling that people would be so vocal on a topic about which they don't even know the basics.

See this is the problem. Rather than accepting that I did (it's literally on my diagnosis letter) you state as a fact it isn't true. How can we have a discussion if we deny each other's realities?

*Ca1mingC1arySag3
You don’t get moderate, mild or severe. You just get meets the criteria/ threshold for autism as some traits may be severe and some mild.

This is people not seeming to understand what a "spectrum" is. It's not called "autism linear graph disorder" is it? 🤣

Just baffling that people would be so vocal on a topic about which they don't even know the basics.*

As I raised this as my diagnosis I assume you are referring to me? My one post on this thread as being 'so vocal' ?

If you actually read my post you will see i went on to say levels are not helpful but no, much better to assert some form of 'better at being autistic' status.

Yanbu. Autism is a massive spectrum and it's not helping the people with learning difficulties or the people without learning difficulties to have one name for all. I have 3 son's with autism. None have learning difficulties with it but even so, they are all very different. My 16 year old is generally ok unless his routine changes or he can't play his piano. My 14 year old has mental health problems as well as the autism. My 8 year old is very autistic but is academically able (although getting him to show it can be like getting blood out of a stone sometimes) he is considered "mild" by some people.

If I say that my eldest has autism, many people don't believe me as he hides it quite well. People don't see that he has only just started being able to invite a friend home or that he needs picking up from college so he doesn't get lost. If I say my youngest has high functioning autism, many people don't believe that either as he hugs random strangers and doesn't understand that it's not socially acceptable to lick things he finds interesting.

I think there should be a separation of autism, learning difficulties and other common co-morbidity like mental health issues and sensory processing. And then have 2 or 3 levels of each. So my eldest would be moderate autism, my middle child would be mild autism, moderate mental health issues and moderate sensory processing disorder. My youngest would be severe autism and severe sensory processing disorder.