That ASD needs to be better categorised

[Noras]

As someone with a DS adult who seems destined for supported living or maybe living independently with PA wrap around as AIBU to think that ASD should be better defined.

i read about people who managed to mask ASD until say aged 52 and I can’t help but feel that it’s a World away from our lives as carers of DS.

He is at university with 37 hours per week PA support.

There is no masking with DS. We have just returned from holiday and pretty much all the staff knew of DS by the end eg someone said ‘oh he’s your son we were trying to think of ways to help him engage in the events’ etc

He has low self esteem and really low moods.

He is petrified of the outside World so we have to facilitate any social life be it with a PA or a drop off to a safe place and then we are on tender hook a waiting to pick up.

Social services class him as highly vulnerable - he’s like a 12 year old in some ways but an adult

I or the PA agency organise all his taxi pick ups and drop offs and all his rotas etc

I organise his activities eg clubs / events any social thing

I organise his clothing / dentist / even reminders to take meds / brush teeth etc

We run his finances / he has no interest - we discuss with him and he just nods

There is no masking - he talks to himself / he can rant in an outlandish way

it seems so wrong that it’s bunched in with all this late diagnoses stuff as it’s so so different.

im not decrying all this ‘ I masked until aged 53’ but it seems like a different thing entirely. People need to understand that otherwise my DS needs won’t get his needs met eg he struggles with public transport and will need a seat so he does not get brushed against and as it is he has a shut down and goes onto a weird sleep.

Sadly people have a level of sympathy and my concern is that it’s being eroded.

I think my 9yo dd is one of those kids that teachers don't believe needs an ehcp, and teachers think that we parents are desperate to label for no good reason. Socially motivated, not disruptive, no learning difficulties. Yet shortly before Christmas she reached burnout for the third time in her short life. We are currently planning how on earth we reintegrate her in a sustainable way - largely because the ehcp has been ignored this year so far. It is heartbreaking, and incredibly debilitating for the family, not to be able to leave the house for days on end. And there is still a frightening lack of awareness within schools of what masking actually means, and the very significant private toll it takes on children and their families. Our dd has been 'in the system' now since age 4, still undiagnosed, currently not attending school and now hearing a voice in her head. I always say that she's high functioning until she's no longer functioning at all.

Despite all of this, I agree that there needs to be a better categorisation of autism. While her difficulties affect her every day to some degree, she is beginning to understand herself better and use strategies to help her adapt. She has transient phases of mental ill health which, with our care and support, improve enough for her to take care of her own hygiene, have friendships, find her way around etc. She's not totally and utterly reliant on us all day, every day. But our experience is that we may have been taken more seriously, much sooner, if her symptoms had a more classical presentation.

My issue with the levels is that i quite often see posts on sm where someone will put something like i am level 1 but have level 2 or level 3 days. The levels are a baseline so if someone who is level 1 has days at 2 or 3 when unsupported or doesn't have their needs met, they are still level 1. Someone with a baseline at level 3 will never have level 1 or 2 days even when supported correctly.

I also find it grating when people with selective mutism describe themselves as non verbal. Non verbal in clinical settings doesnt mean not verbally communicating it means not communicating with words whether thats verbal or via aac.

The inclusion of different presentations has not only made the dx meaningless it's watered down the language and descriptors used within conversations around the dx.

well no because asd isn't a disease.

But the category of "people who can't walk due to injury" all have similar needs - wheelchair, crutches, physiotherapy. Different causes, similar needs.
People with ASD have massively different needs, but (apparently) the same cause: a diagnosis of ASD.

A better analogy would be broken bones: one person has broken spine, one has broken both legs, one has a broken wrist, one has a broken little finger. Same cause, vastly different impact on needs.
Having ASD is like saying 'this person has at least one bone broken somewhere in their body' without saying which bone or bones.
Plus of course unlike bones ASD doesn't heal.

Repetitive injuries can change throughout life from pacing and repeated phrase to dangerous self harm.

You’re right, there is a difference between people who can cope (albeit struggling) with day to day life and those who will never live or function independently. I say this as a parent with one, likely two, bright, high functioning autistic pre/teens. My life revolves around their needs but I am not impacted in the same way you are. They are very different categories of need.

You’re still ignoring what is included in the American system- that people can change levels of support needs throughout life and it needs to be remembered, not just for a day but significant periods of time that impact life massively. My dc now have consistently significant and differing care needs than they had at 6.

This is why documents like EHCPs are so important. If people ask me about my son, autism is usually the last thing I tell them. He's non verbal and doesn't understand you. He's not going to let you touch him. I've had too many conversations with care professionals when I've tried to explain to them about my son and I get the "oh we work with all sorts of children, it'll be fine." No it won't because 'autism' doesn't explain it all. It's like we need some sort of tick list that we need to show anyone who my son goes to see.

I agree OP. Does anyone know why there is resistance to it by medics? What’s the issue? I always thought Aspergers was a fairly good description.

I do think it's an issue. If you say 'x has asd' no one really knows what that means in terms of the challenges they face or support required unless you go into detail.

equally I'm not sure how we can categorise any more than the current levels (which some areas seem to use and others don't when diagnosing) because some people have such spiky profiles.

I haven't been able to catch up to all the new messages but a few stood out.
I am late diagnosed, I am not "rushing" for diagnosis, jumping onto a band wagon or trying to loudly, articulately lump myself with others for my own "motivation". I'm desperately trying to navigate a world where I feel lost and overwhelmed, a world where I am judged and viewed as lazy, unmotivated and disorganised despite two degrees, professional jobs and a family. I've been diagnosed with various anxiety disorders and Depression, I've overcome alcohol addiction and suicide attempts. Turns out I'm autistic with ADHD but nobody ever thought to check except me.
Now I sought diagnosis for both purely to make some sense of my life, to understand that external factors are at play, to try to give myself a break from the pure self loathing I feel constantly. I can research and read up about autism and ADHD and work out more about how my brain works.
Diagnosis doesn't mean there are far more of us out there now, it just means we recognise ourselves and choose to discover who we are. If that sounds trite to you then I'd gently suggest that you haven't been through what I've been through.
As a late diagnosed autistic I agree that there is a huge spectrum and I would never suggest I am as "disabled" as some others. But respectfully, I am disabled and it is my right to attain this "label".

And if you categorise I think it will lead to more assumptions and stereotypes rather than actually helping those with autism.

what is important is that those working with the person get to know them not their diagnosis!

You could say that with any disability though.

And frankly given the roll out of training within places like the NHS so autistic people are better supported it’s unforgivable the way their needs are continuously unmet.

I have two sons and a husband. My eldest son was diagnosed formally at the age of 7, but had received support from the age of 2. He lived in residential care for three years, and now lives in supported accommodation. He is a lovely, gentle and caring young man, who does a little voluntary work. His vulnerability is obvious. He is in his late twenties. He went into residential care at the age of 18 after a terrific mental health crisis.

My husband was diagnosed at the age of 51. He had a history of mental illness and very poor decision making prior to his diagnosis. He had some self employment, but needed a great deal of support in his money management and decision making. He is now in a care home after the onset of a serious mental health condition.

My youngest son is in his mid twenties. He went under the radar because his behaviours were considered to be the result of living in a challenging environment. He has very rigid routines, monotropic interest and very uneven life skills. He lives with me, and he is on the waiting list for assessment, but it could be years before assessment takes place.

Neither my sons nor my husband have a co-occurring learning disability, so there is every possibility that, in the right sort of environment, with the right sort of support, they could function in society. However, the co-occurrence of mental illness (serious anxiety disorders and schizophrenia (husband and eldest son); serious anxiety disorder and unmanaged eating disorder (youngest son) ) are significant barriers to their progress, and are compounded by their neurodiversity.

Autism rarely comes without co-occurring conditions. Each of my family members could be described as 'high functioning' under older descriptors, but in reality, they need a significant amount of support.

One more thing.
I think autism is the top level label and then no one should ever hold back - the most important thing to make clear is what support you or your child, loved one, friend, etc needs. I work in a job where we may need to help support people, we don't ask for your diagnosis, we ask what support would help you. In that way, I don't care if you're autistic, visually impaired, d/Deaf, have mobility impairments - all I want to know is how I can help you and make things easier for you to access our services.

No one would suggest it’s trite.

its just different.

ASD seems to be too wide to be a worthwhile label.

Also for instance peoples expect something annd say for example ‘oh we can meet the needs’ and get something different and can’t.

What i'm saying is those with level 3 are highly unlikely to move to level 2 or 1 whether that is for a day, a month or longer provided given the correct level to start with. Those at level one or two will have that level as a baseline and will fluctuate without the right support.

As a mum of an autistic child with ADHD and ARFID i agree. My child's showed signs at 14 months old of autism. He is verbal but in a special school placement and has had one to one support since nursery (he is now in secondary).

The people who go online spouting about there needs after being diagnosed often privately at 40 often miss the fact they can self advocate. They miss that they got to 40 and have had a relatively successfuly life without support or input so there needs are clearly not as high as someone who from toddler stage displayed traits so obvious that normal things like toddlers group or playgroups were out of the question. Categories are needed to ensure those with the greatest needs get the support they require because most of these people cannot self advocate and there families are exhausted from fighting for them.

I know, which makes it even harder to category. My son, at the point of diagnosis, would bang his head against the wall and had repeated nosebleeds which he smeared everywhere.

Except now he doesnt, he does something else but it actually fullfills the same need and is the same frequency and stops him participating in things. Woukd this shift his category.

Its very difficult to categorise stuff like this even though most of us would pick watch our child to twiddle thier hair over banging thier head for instance.

Do you agree with the rest of the post? You know, the important bit?

Profound apologies if you felt insulted.

@Noras except so many people do feel it's trite, it's been made clear on this thread several times.
However, read my next comment. Yes diagnosis needs to be more nuanced, I absolutely agree, but also we don't need to rely on the one label of autism. Expand, explain and advocate until that labels expand (& they will, the science people are working on it).

That isn’t what they are saying and isn’t necessarily so.

Okay, but the parents of those high needs children are admitting their children have a comorbidities sometimes several comorbidities that make them incapable of functioning so it’s not the autism that is different that is a condition in itself

Read Dr Suzanne O’ Sullivan’s book The Age of Diagnosis. Among other things, she examines the phenomenon of “diagnostic creep” and how labels have been broadened to incorporate milder forms of dx in both psychological and medical spheres. This results in erosion of services for those who need it and medicalises normal variations of distress. With regard to Autism it is often the voices of the “milder” who speak on behalf of those with more severe forms.

I mean someone with ASD / schizophrenia will definitely have crisis needs at times and maybe that abates

The link with schizophrenia is interesting and a steer towards brain damage in some large fo the brain caused my what?

Im guessing carbs, virus, environmental eg toxins etc