ASD…. Should there be another name for a more ‘severe’ version.

[iminvestednow]

Please forgive me as I’m new to this, I have a son with Autism. This is his only diagnosis. He is a beautiful, kind and wonderful son.

DS struggles greatly, although we have made fantastic progress in so many areas he will still never lead a ‘normal life’. He has no concept of friends, money or any social convention, he will need help to get by forever, he is extremely vulnerable.

I’ve noticed recently (great that people are more accepting) a lot of people saying, I’ve been recently diagnosed with autism aged 40 and it’s helped me so much. I think it’s great that people are getting support but does it dilute what severe autism is? Most of these people are competent fully functioning members of society and will never need the kind of help my son does. Should there another term to differentiate?

Yes I agree. I find people like me when I Google Asperger’s, not Autism.

If it's not clear, how could it be clearer? I am trying to be clear and be respectful, but it is quite obvious to me that saying disabled + autism is referring to other disabilities aside from autism. Especially taking into account my previous comments in the thread, which I appreciate, it's a long thread and you might not have seen. But the second paragraph in that post, which you chose not to quote, was also intended to be clarifying.

I added "isn't it" because I wondered if this is a neurotypical communication fail. I am not NT (I have ADHD) but I am not autistic and my communication style does seem to be closer to NT than ASD going by some of the joint ASD/ADHD support threads. I do think sometimes the communication attempts of ASD individuals and NT individuals often miss and this might be part of the issue.

I think the issue @relamped is that someone like my son isn’t autistic separately from his learning disability. It is part of the same condition.

I think this is key. Intellectual disabilities are so much more common in autism to the extent that it's not "oh you can have eczema, short sight, or both or neither" but they seem to be caused by the same thing, which could also cause autism without IDs.

Rather like families where some have ADHD, some have autism, some have both and some have neither, but it's clearly genetic.

If it's not clear, how could it be clearer?

I was just acknowledging I misread you. That's all. I see what you mean now.

It’s also different types of genetics @drspouse there is no autism in my huge extended family (& I have over 20 cousins who all have children) & none in dh’a extensive family. No missed dx either. No broader autism phenotype. ds1 has two brothers who are not remotely autistic.

Geneticist thinks he has a de novo single gene mutation not present in either dh or me. Funding was approved for whole exome sequencing just before lockdown and what was meant to take 6 weeks hasn’t happened. I will chase after Xmas as I think genetic labs are doing less covid now (his is not an urgent case, I expect there will be more of a wait).

But anyway if we track down a single gene mutation no-one is going to say ‘oh he has a gene mutation and autism and a learning disability and epilepsy’ and if they are separate from each other. The cause is the same. They are finding that de novo single gene mutations are a common finding in those who present as ds1 does.

this is true, but with ASD the problem is how to measure the severity because there isn't an objective scale. With something like sight- or hearing impairment it is possible to measure what percentage of capacity someone has compared with an unimpaired standard. With Autism being a spectrum condition that means there isn't a single scale that you are at one point on and can be described as 63% autistic vs 32% and so this person is more autistic than that. one person might rate high on one measurement and medium or low on another, and another person be the other way around, and they are both significantly affected but have very different presentations, and meanwhile there are some aspects where an objective measurement isn't possible because you can only go on what the person themselves describes as their experience, and some people can describe that well if they have verbal skills and others can't describe it at all so all you can conclude is that the issue is present or absent and any scale would be meaningless.

Why do you need a minute scale? I don’t need to compare my son’s autism to anyone else (or his epilepsy or his learning disabilities). I just need to know how best to support him. I would personally describe him as severely autistic, severely learning disabled with a significant language disorder & epilepsy. It gives enough of a picture of his needs to get pointed in the right direction.

@picnicshicnic Wow. True autism? 😂 I don't even know where to start with that one.

No longer a fitting term because Hans Asperger would have sent the children in your family to their death.

I always go by the mantra "if you've met one autistic child, you've met one autistic child". My son is what I would describe as "high functioning", however there are areas of his life I am aware he will always need additional support. Yet I know other autistic children who will never have any independence, are non verbal etc. It is exactly why it's called a spectrum because it is vast. No two children with this diagnosis are the same.

I don't know that it's helpful to go down the road of somebody being more autistic than another because each child has issues that are unique to them. Similarly, my son also has a diagnosis of combined type ADHD. I'd say that causes him more problems than his autism but for others it's a driving force that makes them successful in life. I worry about that side of him far more as despite outward appearances, it's the one thing that actually puts him in danger.

@Sindonym I have a lot of interesting conversations when i say my son wont do gcses, like you its relevant to the topic not just me boring on. Lots of 'you dont know, you musnt limit him' his school dont even teach gcses. He isnt as severely afftected as a lot of the children on this thread but at 13 I think we have a fairly good feel for the gcse thing.

@TheBirdintheCave well ok then 🤷‍♀️

I get the opposite about my able child. Oh they might not be suitable for him, oh lots of really successful adults don't have GCSEs (maybe, in the 1970s, you could make a well paying career without any qualifications but now, if he wants to do e.g. animal care at college he needs a few!).

No longer a fitting term because Hans Asperger would have sent the children in your family to their death. that’s not why the diagnosis were merged and Asperger stayed with his Aspergic children and hyped up the “little professor” idea to keep them safe in a world where being disabled was life threatening. Personally I don’t think there was much choice beyond running away and leaving them to starve. Regardless IMO you would be foolish indeed to ignore his thoughts and ideas. He championed working towards your strengths in a time when many similar practitioners advocated incarceration in institutions and no stimulation or aspiration.
The “final solution” would not necessarily have been the outcome for all the autistics posting on this thread but would probably have been the outcome for all the “higher support needs” or “severe” autistics who people can easily identify even if we are being pressured to pretend we can’t.

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In terms of funding, surely it helps to know if the person needs 24-hr care or can work and live independently. If they can never go to school or read or write or if they can sit their A levels and go to university. If they are married with a family, go everywhere alone or can’t go out at all without a full-time carer. Lots of ways to look at the overall severity of impact. Less independent people need more funding.

Not saying independently living people with autism don’t have difficulties - it is classed as a disability after all. But there are some activists who will say in the same breath that autism is not a disability - yet still seem to say, funding and support-wise, that there should be no difference between them and a person with autism who can’t live independently.

Imo however a proportion of these contradictory self-diagnosed activists do not have ASD at all but perhaps some mental health issues or a personality disorder that makes life harder for them. Or a separate physical disability as some pps have mentioned on this thread - which may be more difficult to manage because they also have autism. And then whether the autism is a coincidence or whether it is inextricably linked to the physical or Intellectual or mental health disability….all so difficult to untangle.

@drspouse I have heard friends from my sen mums group struggle with that too. Loads of very capable children not accessing education as there isnt much for academically able but still need all the SaLT, OT, small classes, visuals, etc.
People having to chose between support for autism and qualifications.

People having to chose between support for autism and qualifications. this is horribly true.

This was a really helpful visual, thank you.

Similar to chromosome,deletions/ duplication,s many people in the rare chromosomes disorder,support group UNiQUE ,have a diagnosis of autism along with their rare chromosome disorder,often with other co morbid conditions,it's impossible to separate out the condition,s

I totally understand what you mean regarding the danger aspect.

My ds has autism, moderate learning disability. Adhd. Goes to special school etc.

The adhd causes us way more problems, how impulsive he is, his SS said his autism is well managed by the teachers, it’s his adhd that cause them the problems. They said they have tons of experience between them all but don’t come across ds severity of adhd very often, his specialist teacher of 20 years said he has never met a child as erratic as ds.

He literally climbs the walls, or chews through wires. Or is squirting water into the plug sockets wanting an electric shock, his teacher phoned one day and said ds was absolutely fuming with me today, I said why? ‘Because I wouldn’t allow him further access to his water bottle to pour into the plug sockets and light himself up like a Christmas tree’ 🤣 or he’s stripping off naked and trying to hoover his uniform up off the class carpet, then wants to ride the hoover back to the cleaning cupboard when the teacher is packing it away, then wants to climb said cleaning cupboard shelves to get all the bottles of juice off the top shelf to make a ‘juicy wine’ (yes he did this last week) he’s exhausting to watch 🤣🤣

He’s on medication which does help. (A LOT to be honest!!!! took several trials until we got the best one for him)

But yes he really does put himself into dangerous situations far too often. He has to have the absolute arse supervised off him. He’s 9 so I’m hoping he’ll learn as he gets older, I think some areas he’s maturing in and I can see definite progress so I just have to hope and pray for when he’s older.

When I get the school email I think just when I thought he couldn’t do anything to top last weeks.

thats very difficult to answer but it became apparent to us along the way that our son was changing. In the case of my son we kept diaries and noticed he’d have very unexpected meltdowns as soon as he woke up sometimes as well as just before he went to sleep. We could never figure them out until one day I was talking to his Professor of Neuropsychiatry (his speciality was epilepsy) and he said to me there is a form of epilepsy associated with the sleep/wake cycle, it also triggers aggression and this is what you are describing. And that was that.

The diagnosis of Tourette’s when he reached adolescence came about when his stimming became much worse and crossed over the line from stimming and making noises to something thing else entirely. We discretely recorded episodes of the most awful and heart wrenching tics my son developed and they were looked at by the same Dr and a colleague.

The Bi-Polar diagnosis developed from mood swings over two years to a full blown manic/depressive episode earlier this year lasting 2 months. One night he walked 24,000 steps whilst pacing round the house but that was the week his episode peaked. He would also have periods of crying as if his heart was breaking but they only last a short time before he was manic again. He has rapid cycle bi-polar.

Where we live having a private Dr is normal so we use our version of the NHS to keep our son is in the system but we also see his NHS Drs in their private clinics outside of normal working hours.

Im under no illusions whatsoever about how my son will continue to deteriorate the older he gets despite our best efforts to keep him well and happy.

@MrsTumblebee do you have any details
about that form of epilepsy (does it have a name?). My son has epilepsy and going to
sleep/waking up are commonly risky times for aggression (thinking about it especially before he had his tonic clonics and was medicated). No-one has ever mentioned that to me (they usually spend half their time telling me his seizures are autism - I had to video a tonic clonic to even get the diagnosis!)