Those with severe autism need their own diagnosis

[Cubic]

Ok so, I'm being brave and putting my head above the wall. This is a long one as it's an emotive topic.

The autism diagnosis changed in the dsm (American diagnostic manual) in 2013, than hit the UK too and our diagnosis changed to include people who would have been diagnosed previously with other conditions; Aspergers, childhood disingenerative dissorder, retts and pdd nos. Aspergers had links to the nazis, there were concerns that the other conditions wasn't taken as being as serious/ a disability, funding wasn't aimed at those who were seen as "higher functioning".

The dsm gave levels 1-3 depending on support needs. Some people fluctuate and some just stay at level 3 all the time.

Until this point autism was seen as a severe disability. Those with the diagnosis were seen as being disabled, this wasn't questioned.

The diagnosis changes linked with the neurodisability movement and self diagnosis has meant that those with the most severe impairments are now not as catered for. Many of those with the most needs lack the ability to communicate and therefore can't advocate for themselves. Their carers are exhausted too.

Those who would be seen as more able can suffer with severe mental health issues that aren't always treated due to them having the autism diagnosis.

Profound autism is being tabled as a way to seperate the diagnosis so that those who have extremely limited communication, low iq and require constant life long care etc due to their autism not mental health can have seperate diagnosis.

This is opposed by many of those who are more able. One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.

I support the profound autism diagnosis. I think there is a world of difference between those maybe diagnosed later in life, who work and have family and friends to those who require support in every area of their life for their full life (all the time, not fluctuating), with no communication who can't access our world.

This doesn't mean I don't recognise the needs of those who aren't profound.

IABU for support a seperate diagnosid
IANBU for wanting a seperate diagnosis for those with severe/ profound autism.

• knowing how these threads can go, I may not reply to every question, statement or post.

** I'm aware that terms like high/ low functioning aren't supported by many of those who are able to communicate well.

I think it’s stupid to compare two people that have had a difference of 50yrs of interventions to each other and expect the one with the 50yrs of intervention to be exactly like the one without.

You have no idea how I was at the age of your child, you also have no idea who he could become.

Your DC may identify as autistic but may not be as to get a diagnosis, and therefore to be autistic, you have to be significantly impacted. If they are not they may have some autistic traits but not be autistic. This is why lots of us don’t like self diagnosis, because people are saying they are autistic when the likelihood is they aren’t.

I would be one of this who look like I am high functioning as I have a very good job, DH, and DCs, was late diagnosed ASD and ADHD. However, I am significantly impacted, I cannot live alone, I cannot manage my finances myself, I only hold down my job as it’s very much suited to my autism (aligned with my special interest, lots of flexibility, can work in hours not set times) and even then I do struggle, I stim and always have and one of those I hurt myself, I’ve had suicide attempts as a teenager and self harmed for many years. But I would be classed as the lower level of autism if the UK used levels.

Would it be better for teenagers like that to have a diagnosis themselves that doesn't align them with people who are more severe or more typical? Would that help them?

I think one basic issue is that there appears to be a move away from describing people as having a Learning Disability. I often see children who clearly have both LD and Autism but the LD is not mentioned/considered as a discrete but linked diagnosis by parents and education professionals. It all gets lumped as Autism which isn’t helpful.

Yes so is mine lived experience. And I a, saying that the professionals cannot predict what each person needs without meeting them first. You are being unrealistic and getting frustrated over reality. I don’t assume we are alike so much as similar to each other. You have never been the child or adult in the scenario of trying to get their needs understood without being able to say them.

’50 years of interventions’ is that even available on the NHS?

A parent absolutely has more idea about their child than a random person on the internet.

Interventions can't magically make a child with autism including severe LD, not have a severe LD and suddenly have understanding that they currently don't have.

This is a really long read but it's an interesting one, especially in the second half:

https://open.substack.com/pub/dispatchesfromtheautismwars/p/i-would-cure-my-autism?utm_source=share&utm_medium=android&r=87c2c9

I think this is true and happens with mental health needs too. The problem we are often told is seperating them out. Where does one need start and the other end? Does one cause or amplify the other?

I am autistic and have selective mutism. It doesn't matter whether the communication is verbal or not, the language centre of the brain shuts down in times of anxiety, and you need the language centre of your brain and the motor centre of your brain to process the words you're trying to relay digitally.

I'll give you an example. Last weekend I had to call someone out for touching my significantly speech delayed autistic child inappropriately as they can not verbally advocate for themselves, he denied it, started escalating and I could not even move a muscle. I got ushered into a room to give a statement but I could not get words out, I was given a pen and a piece of paper but I could not even grip the pen. I had very limited motor use. I would not have been able to formulate a sentence in makaton or BSL even if I was fluent. That would have required extra processing in my brain when critical physiological changes had happened within my brain during a fight, flight or freeze response.

I understand the biological mechanisms behind why I can't communicate in times like this.

You need to tread carefully where you don't understand the mechanisms behind something. It's best not to assume people haven't considered alternative communications and rather that they have considered them but understand them unworkable.

I am so sorry you have had such a hard time. I have had a late diagnosis of adhd and do think an earlier diagnosis and better understanding would have made things easier for me.
I do think as a family we have embraced difference and let our quite ND kids be who they want to be and told them in more diplomatic ways to ignore small minded twats and enjoys their differences.
Their has been tough times and bullying but we have tried to not dwell on those bits and whilst acknowledging the hurt also been quite a bit "fuck em and move on".
It probably helps that we meet lots of jokes about our neurodiversty and celebrate our good weird bits!

I’m in California.
I didn’t understand much of your OP, @Cubicexcept that it’s about autism diagnoses.
Am I close?

I think that no matter where you live or what mental illness you have, gou should receive 100% medical & psychiatric & Rx support.
Without fear or question.
It’s inexcusable that that’s not the case.

I have severe insomnia. Is it psychiatric or medical? Well my medical doctor said it must be mental - which infuriated me - and he hooked me up with a shrink. I love her, though.
The odd thing is my mum had it. My Nana had it and so did my great-grandmother. They’re all I know - insomnia may go back generations for all I know. That’s exceedingly odd to me and doesn’t sound like a mental illness.
But I would be sad to lose the therapist - she actually listens to me.
Why is it that female doctors listen and male doctors don’t?

It is difficult with children. For my child, obvious from 1 yr old she is autistic. But the level idk. I thought she could be profound, but smearing has stopped and age four starting to say single words, very little understanding still. No idea what the adult diagnosis will be.

so is she moving through the spectrum.

Did you ask her why?

Imagine carrots being the cure we've been missing all these years.

I am neuro typical so apologies if I'm missing or under appreciating anything. I do agree that LD is seen as secondary and not always held or considered when consultants list diagnoses. Some medics only refer to the diagnoses in their specialisms and so it gets dropped from the list. Other situations where it's so apparent that people just forget to mention it and it's assumed. However I've known people to wrongly assume a LD where the child is cognitively able, but challenged with ASD/ ADHD and other conditions, and such children are quite unable to take responsibility in the ' normal' way but our systems seem chronically unable to make that call formally leading to quite inappropriate potential criminalisation, instead of the intensive support which may be needed over the longer term.

Apparently they have vitamins in that would “speed him up.”

I’m assuming she didn’t mean in terms of mobility because that child is fast enough.

To be honest at that point I walked away from her before I lost my patience! I believe I said “oooh he’s a bit beyond that,” and left.

I did not assume. That is why I write it as a question
’ have they tried sign language’

is a question. Not an assumption.
Sorry it would not work for you, but it works for some id worth asking the question.

im leaving now because as us typical my words get misunderstood abd i get accused of saying things i did not say and generally told do fuck off.

No I'm not actually. You have literally no idea how difficult things are.

My autism has damaged me very badly BECAUSE people think I am "normal".

Same. DS2 is at a (really good) SS that is specifically for autistic children who also have learning disabilities. I would describe pretty much all the students there as 'profoundly autistic' though of course the presentations and ways in which their ASD affects them varies a lot. We get sent an email newsletter from a county ASD charity monthly which details all the clubs, drop-ins, holidays, craft sessions, museum slots, etc that are aimed at young people with ASD. Every single one is aimed at people who can function in an appropriate way in order to access those activities - sit at a table, comply with instructions or rules, work together, not require 1:1, focus ... talk. It breaks my heart a little bit every time I read one of those newsletters because there is never, ever anything for children like my son, and then I wonder why on earth our school sends this regular newsletter out, because very few (if any) of our school's students will be able to access them.

WRT to the OP's thread - yes, I agree that we need in some way to make a distinction between those people who have ASD severely enough that they will need lifelong 1:1 support to live, and those who won't. I'm truly glad for adults who were diagnosed in mid-life and now feel that their lives make sense, but I cannot see how on earth their needs are comparable to the needs of profoundly autistic people. My son will never live on his own, drive, vote, budget his own money, have a meaningful job, have a sexual relationship or children, or understand the confusing world he lives in. The people who are diagnosed in mid-life very often already have jobs, relationships, kids ...

Just to let you know - Retts remains a distinct diagnosis from autism. It is a genetic disorder, which may come with autism or autism-like behaviours, but it’s not in itself part of the autism spectrum.

You asked someone with a NINE year old if they have tried sign language.

Of course they bloody have. Their child is 9!

no idea why you think I think o know her child better than she does, she was claiming there is bi comparison between me as an adult abd her chikf- true but my point is thar u was like her child, there weee similarities give it 50yrs because he child could become like mr which isn’t so bad.

Bit anyway, I am off, as per usual I cannot communicate effectively even in writing as my comments given in kindness abd to offer hope are being received as completely not what I intended, questions are being interpreted as blanket assumptions. I follow all the rules of English language and it’s overlooked by some secret rules you all have. Which is what always happens, more fool me thinking I could communicate at all.

good luck with your autistic kids abd good luck not listening to autistic adults who lived what your kids are living. Apparently there is nothing you can gain from the perspective if those of us who have lived it, not just observed it.

Nobody has told to you fuck off. I would say that I am usually far firmer than this when it comes to people focussing my sons needs, and the only reason I haven’t been is because I think your needs might be affecting the way your replies are coming across. I’m giving you the benefit of the doubt that it’s not intentional.

You did assume, you assumed that our children had language they were unable to use due to mutism that could be accessed with BSL.

What you didn’t consider was that it was a lack of language and cognitive ability to develop that language, so that wouldn’t help.

It’s not common for children with such limited communication to use BSL, they generally use Makaton as it’s simpler - if they can, which my son can’t.

I think, that what you’re doing is applying the things that worked for you to other children, because that’s your lived experience and it at least somewhat worked.

Our children aren’t you, they have different needs, and we know them well enough to know where they are, what their development looks like, and where that is likely to lead them.

Well why didn’t they say so? Why the attacks? They still haven’t said so. It’s easier to say yes we trued that it get all contemptuous like I’m suggesting electroshock therapy or ice baths.

DS spent all last summer having significant nosebleeds, think 30 minutes twice, sometimes thrice a day.

We took him to A&E where they told us he wouldn't cooperate with cautery if they tried and there's nothing else they can do for him, so told me I had to go to my GP (4 week to appointments) to arrange an ENT appointment where they will consider general anesthetic.

So off we popped to the GP, GP ordered some blood tests, found delayed clotting factors, referred us to ENT, of course ENT is right where the audiology rooms are for hearing tests, signs pasted everywhere in the waiting room saying silence required as hearing tests being done in the adjacent rooms, with a vocally stimming child who can't follow adult led instructions, where the wait time to be seen kept being extended and extended. We were eventually asked to leave and someone would call to rebook at a "quieter time".

When the call did eventually come they asked how he was recovering after surgery. I had to sharply remind them no surgery had taken place because they would not see him during clinic for a pre-op, despite telling them he needed to be seen swiftly, at their least busy time, and offered a quiet waiting area. I was then told they were very sorry but would call again to rebook.

Not 20 minutes after the phone call I was sent a text with a link to his discharge back to GP letter.

You're absolutely right, frustrated does not cut it at all.