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.

Sirzy too many EHCPs are written in this way, but it’s possible to get direct therapeutic intervention written in F. My 2 DC with EHCPs have multiple therapies in their EHCPs.

All an individuals specific needs may not be known until a comprehensive assessment has been undertaken, but given the diagnostic criteria anyone with an autism diagnosis would benefit from (in the true meaning of the phrase, not the woolly, vague LA meaning) therapies such as SALT and OT.

I agree OP and so do many others including professionals in the field. There is a growing movement, especially in the US I believe, and undoubtedly there will be a reclassification of some sort in the future.

You simply can't compare the needs of those with profound difficulties who will never be able to live an independent life to others diagnosed as adults capable of advocating for themselves who have sucessful careers/married with children etc. One size does not fit all.

Couldn't agree more about the value of sensory OT - it was then that first recognised one of mine had ASD we'd self referred her because she was having so many accidents, and the sensory regulation therapy was the most useful help we've had.

@Ca1mingC1arySag3 how am I stereotyping? If yourd referring to my ref to theory of mind and rigidity of thinking, surely you must realise that they are areas taken into account in the dx assessment. Rigidity of thinking is one of the core areas of the dx.

Yes, I have been through the dx process with my son?! Ofcourse people can get a dx without having autism. People are misdiagnosed it does happen and people diagnose themselves then chase a dx until they have one. As it isn't a physical disability ofcouse people who are aware of the assessment znd the criteria could essentially lie and say how their traits impact them or give false anecdotes etc.

Actually some services are fing fenced and require a dx. They are autism specific. This happens quite commonly in adult services, less so in children's but still occurs. Many charities that are autism specific will ask if the person has a dx in order for support to be given. One we came across last week offers therapeutic horse riding and haven holidays with part of the criteria being Autism. Locally there are specific groups, courses, proffesionsls that can only be accessed if a dx has been given due to specific funding.

Do you really not understand my previous points about funding? "Surely given the state of the nhs you can realise that there is only finite resources and that the inclusion of other dx in autism creates more people accessing services ring fenced for that dx. In addition as the number of people getting a dx is increasing and the number with not classical autism is increasing greater than those with, services will be screwed to meet those needs. Further to that research is being hindered as projects like the autism genome project become subject to not being inclusive enough."

You still haven't answered why splitting the dx impacts you or your children? You'd still have your dx and by your way of thinking your child's "needs" wouldn't dissappear? It's just that those with profound autism would be recognised as a different group.

Just to add, I hope in future as research is completed there will be even more diagnosis especially in regards to the impact of genetics.

Diagnostic manuals are political documents. They are subject to trends and lobbying. Sometimes it might be two research teams arguing over cut-off levels of some measure, or the significance of a particular finding. Other times it may be subject to intense lobbying by interested groups. The idea that science exists separate from this and continues in a even direction is nonsense. Just like other biological taxonomic studies, diseases and conditions can be radically redefined. The biggest impact on autism diagnosis is likely to come from genetics. Genetic understanding has ballooned in even the last five years. But it is also becoming more apparent that autism is not a single condition, or two conditions (profound or not). I expect at some point there will be a radical change that will split autism into possibly dozens of conditions. If this doesn’t happen, then I suspect this will be down to activists not science. Already studies are finding the pattern of responses to standard diagnostic tools can be used to predict specific genetic conditions.

He’s an adult. When he was at school he had it specified in correct part of statement/EHCP. But tbh the NHS SLTs we could access didn’t have the skills he needed anyway. We were able to buy in that specialist support

His statement did mean his private SLT could go into school (paid for by LA) while his NHS one was on maternity leave so that was useful.

A lot of schools are buying in their own SLT service now so maybe things will improve in terms of there being something to access.

Oh sorry that was all to @JustKeepBuilding

I gave up with the EHCP. It's a pile of cut and paste crap and meaningless. After inpatient care and battling for treatment I had no energy to go to tribunal. So education has been down to the school who have been brilliant, but therapies - not a chance. Couldn't afford it.

@Sindonym Sorry I presumed from your post DS was still under 25/26.

What was required in terms of the therapists’ skills should have been in the statement/EHCP so if the NHS SALTs couldn’t provide what was needed the LA must have provided it.

The NHS can’t provide the therapies my 2 with EHCPs need, independent providers are funded via their EHCPs.

Tell me this. If both "groups" shouldn't be called Autism/ASD, who do you propose should lose autism/ASD as their diagnosis? Do us high-functioning autistics get to be autistic and those low-functioning get something else? Like severe neurodevelopmental disorder? Or is it us high-functioning autistics who should not be allowed to be called autistic because it "belongs" to those with an intellectual disability.

To me it doesn't matter what the dx name changes to as long as by saying it there is a clearer understanding of my sons presentation, his needs etc. Severe autism and autism would service. Although a neurodevelopment disorder saying severe autism instead gives more information as there are other neurodevelopment disorders.

Thats so interesting. I wish we could afford genetic testing. We have a friend whose daughter presents just like our son and they both have severe nut allergy to an unusual nut and some other physical traits in common - she had genetic testing and it found some deletion that was causing things. Id love to know if my son had the same deletion.

@JustKeepBuilding TBH it wasn’t such an issue once he was at school as he was in special school - so the people around him knew what they were doing. We could have battled to have high tech AAX C assessment introduced via the statement (as it should have been) but in the ‘pick your battles’ list that was low down as it was relatively easy and cheap to get him assessed and access a free trial device. At that time it would have been very difficult to provide evidence that he was even suitable for a high tech AAC assessment as you had to practically demonstrate you could use a device before you were allowed near one (still elements of that in the U.K.).

SLT was essential for the short period he was at mainstream and that was covered by the maternity and private SLT going in.

Ask for a referral to NHS genetics.

My son is waiting for whole exome sequencing because his geneticist is certain he has a de novo single gene mutation. It should have been done years ago but funding was agreed just as covid struck.

Yes I've got a chromosome abnormality but that's only what my parents were told when I was born - it's an interesting thought that it may be related to my dcs' issues.

I'm sure the future will be more revealing just based on how psychiatry has developed over the years.

clearer understanding of my sons presentation, his needs

This is what I don't understand. A name, a label, a diagnosis won't ever give you that, because your son is an individual and his presentation and needs will be individual to him and different to others with the same "severe autism" label.

I've worked with many people with "severe autism" who will never be able to live independently. They really are all different. They all wore pads, but some could use the toilet if you took them regularly. Some could eat unassisted, others had PEGs. Some couldn't walk. Some had to wear mits to stop them chewing their hands. Some were blind. Some were deaf.

How can you say an autistic child who can walk, but can't talk, can eat, and has daily meltdowns...has the same level of severity and needs as an autistic child who is blind/deaf, can't walk, can't talk, has to wear a helmet and mits, and has to be fed via a PEG? Or does that need to be divided even further? Do we need a "moderately autistic" label so the severest of the severe can have "severe autism"? In which case most of the children talked about on this thread wouldn't come under "severe autism".

I bet those people you worked with didn’t only have an autism diagnosis. They weren’t blind because they were autistic.

Being blind/ deaf isn't related to their autism, they are separate dx. Likewise the physical aspects. You are referring to people with additional dx. Having any of those things doesn't mean they have severe autism.

I'm talking about the people whose autism traits are severe. They do exist without the additional physical disabilities you've described.

Did you watch the Chris Packham programme the other day? There was a young man on there who with time was able to communicate quite meaningfully however he presented in a completely different way to the lady who was married and had a child. They also briefly showed a day centre with people who did have ld alongside their autism again completely different in presentation to the lady who masked.

If I was to have a conversation to someone who I'd met for the first time and said my ds has autism they would have no idea of what that means. If I said he has severe autism they would have at least an indication that he was severe impacted. If I'd had the same conversation before the dx changed to include apergers/ high functioning etc again they would understand that his needs are more like his presentation.

Language is really important and being able to use words to describe his needs adequately is vital.

I am genuinely (in a discussion way not an argument or point proving) interested in why you're against the splitting of the dx? Personally if I did have autism I would want to be able to say my diagnosis or have them read it in paperwork and people understand that I'm nowhere near as disabled as my son or present like him. I'm interested in why people don't want there to be separate dx, why the two extremes and completely different presentations of the condition should be given the same dx.

A married working mum with a mortgage, career etc given the same dx as someone who needs 24 hour care and support with all aspects of life. This doesn't take away that she will have needs, it's just vastly different.

What's your point? Autism with a learning disability isn't only autism either. There's autism and learning difficulties. Autism and OCD. Autism and selective mutism. Autism and etc.

Autism on its own is autism.

I think the naming of a thing allows the talking about and studying of a thing and that allows for the possibility of helping, supporting or curing a thing (depending on what it is). I think it’s vitally important that we are able to accurately diagnose the underlying cause or drivers rather than just group together randomly selected people with similar outward symptoms. The present descriptors make it so hard to discuss as we pick our words to try and describe fairly clunky facets of our diagnosis. I don’t think it will lead to progress and I think it hinders research and treatment which should concern us all.

As for the “who should be chucked out of the diagnosis”, nonsense it’s all a bit emotional for me. It’s not a trans/cis hissy fit, it’s a serious subject with serious ramifications. How does it impact provision? How does it affect new research and historical data? Who is marginalised and who included?

Repeatedly on this thread I have read high functioning used to describe people who can advocate for themselves and have few barriers to communication. There are many totally dependent HFA who cannot talk or manage self care. They do not have low IQs they have autism.

They're all comorbidities. They can all coexist. You're talking about people with autism and a learning disability. The learning disability is a coexisting condition. Autism is not a learning disability. You can have a learning disability and not be autistic. You can be autistic and not have a learning disability. But autism with a learning disability is the one you want to isolate from the others and treat as different. Why?

The reason I'm against them splitting it is because autism is autism. It can exist on its own or in conjunction with other conditions. This combination is what makes every person different and makes their needs individual. There aren't separate autisms. Just different needs.

I think there ARE separate autisms but they aren’t necessarily easy to distinguish from each other and doing so is the key to the next big leap forward in focused support.

You're talking about people with autism and a learning disability. The learning disability is a coexisting condition. Autism is not a learning disability. You can have a learning disability and not be autistic. You can be autistic and not have a learning disability

@BadNomad

spot on.

The fact the autism is by itself not a learning disability is not understood by so many. Thank you for putting it so succinctly.