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 people on this thread are understandably very focused on physical issues as a basis for PIP payments. Both the ASD adults I referred to above were claiming PIP ongoing on the basis of a previous inability to cope with life due to the depressive effects of their condition. Being unable to get out of bed due to your mental state is pretty clearly something that should trigger PIP. The issue with both young women, I think, is the continuing payment of PIP once recognition of their ASD and treatment for their symptoms had put them into a position where they were both long term employed with few apparent issues, for a considerable length of time. At that point in time, it would appear that PIP continued to be paid on the basis of a label and not of need. I wonder if a "lifetime" PIP award is simply normal for an adult with an ASD diagnosis on the basis that it's a lifetime condition?

The one in the Guardian was quoted as needing the payment to pay for her car. My friend I have some sympathy with. She says she spends the money on buying the therapy that the NHS can't provide, and that without that therapy she will cease to function again. Which raises a whole other can of worms about why people can't get mental health support on the NHS!

i definitely agree. My son is classed as autistic but is a world away from those who are able to mask. He cannot talk whatsoever. At all. No words. Thats why it really annoys me when someone with high functioning autism is labelled as non-verbal when they feel they cannot speak in certain situations. My son is still in nappies and frequently smears or takes the nappy off because he simply does not understand. He has episodes of being violent towards himself, hitting etc to the point where he has bald patches and constant bruises. His needs are no where near my dd15s was recently diagnosed as autistic.

PIP payments are reviewed. My dd has 4 life time diagnoses and 2 that could be argued are not. So 6 NHS diagnosed conditions . She gets the full amount ( which is almost impossible to get)and will still be reviewed- it’s due any time now.

Yep my verbal autistic dc’s self harm is equally as horrific.

There’s no high functioning autism and a learning disability is a separate issue to an autism diagnosis.

I’m so very sorry your son’s needs are so great. However, I don’t think adults who can speak, but sometimes don’t owing to overwhelm, are usually called non-verbal. That’s referred to as selective or situational mutism in my experience.

I'm not talking about irlen syndrome. I'm talking about something that I was diagnosed with at 4. It's not in the DSM or ICD because it's not that type of impairment. It's recognised by top hospitals like Moorfields and I've met someone who specialises in my diagnosis

It really isn't rich to suggest that my GP knows more than someone who has known me for 5 minutes. I remember my GP being pissed off that she was asked for a letter to confirm my disability even though I had a piece of paper from the eye infirmary that everyone else accepts as proof of disability

I'm not sure why this discussion always gets reduced to a competition about who has it worse.

That really is not the reason people who spend vast quantities of time with people whom it would be very useful to be able to refer to as profoundly autistic, would like differential diagnosis.

It is not to do with wanting to win a suffering competition, it is to do with wanting to be able to use language with accuracy both professionally and colloquially.

At the moment autism is diagnosed as either with, or without functional language impairment and with or without disorders of intellectual development. So that's as far as categorising goes.

Those without functional language impairment and without disorders of intellectual impairment often don't have much in depth and long term experience of those with both of those things, yet in some cases berated parents of children and adults who do have those impairments, claiming that the children (including adult children) are rendered perfectly happy due to not being aware of their differences (which is an over simplification - people with mild learning disabilities are often aware and will sometimes become very distressed by this, but that's another tangent) and will claim the individuals don't have any problems, only the parents do. This is just utter nonsense in most cases.

I think those who see a value in the profound autism term see individuals who have intellectual impairment and functional language impairment but are above all disabled by their autism. The visceral sensory overwhelm or executive function and core flexibility impairment distress and disable the individual far beyond a peer with the same level of intellectual impairment, and in a far different way.

LD isn't separate though. It can be a seperate dx but for many it isn't because their autism dx covers their presentation. They are severely/ profoundly impacted by their autism all the time. No fluctuating.

People dx'd with autism don't all have an equal amount of autism. Some people do have comorbid conditions, some people do have LD alongside. For those who are impacted severely it is incredibly difficult to pick out what is caused by LD and what is caused by their autism.

If you feel @PinkChaires child has LD then surely your childs sib's must be mh not autism? I accept that autism causes mh needs and some people really suffer. The difference is though that mh issues can be improved if only for periods of time with the right support/ therapy (for the majority, not all). The LD or what you see as LD won't be improved as that is the person's state of being.

Posters like myself did not reduce this to a competition, posters like you do with the added caveat of being deaf to the huge difficulties those with an autism diagnosis that don’t fit your deserving picture have. Pure abelism.

You don’t know anything about my dc’s diagnosis and no their autism can’t be improved.

What we need is for society to be better informed.
It really angers me when I am told that I dont have a right to my diagnosis because someone else has very different experiences of it, it should not be about ring fencing ASH or ADHD to people with specific challenges, as the spectrum for both is broad.
I have a non verbal ASD son with developmental delays. I have ADHD myself. The amount of times I get told by people "oh you dont seem to have it" or even laugh when I say I have ADHD without knowing what is going on in my head is staggering. Life for my son is blooming hard but I dont feel like people who mask or manage their lives otherwise are any less worthy of their diagnosis just because our life is shit. There should be room for everyone!

I didn't write that their autism could be improved. You're misrepresenting what i've written.

Thank you for this post, you've managed to word my feelings perfectly in a way i couldn't come up wuth.

I am AuDHD and also do not work full time (part time self employed, from home). Working full time during my late teens and 20s I had debilitating panic attacks and a ton of anxiety based skin issues. Once I had kids and became a sahm during mat leave these things massively improved, I had three kids in quick succession and so didn’t return to work inbetween pregnancies and since they started school have also not returned to work because I already feel at my max limit managing the house and the (very) part time job. I have accepted I will likely never work more than I currently am because I tried for 12 years and it was horrible. It’s very sad because I am bright and capable, and love being challenged. Am hoping if I ever get on adhd medication I might be able to cope with life and work better. But I’m not sure if it’s the autism or the adhd that makes working so stressful - if the autism then not much can be done.

Exactly this!

@Noras curing brains is very very difficult
it is one of the growing developmental areas of medicine but it’s also the most complex thing in the universe that we know of
it sounds simple “tweak a gene brain is cured” but it’s really not
anything that alters brains, drugs, surgery, is risky very risky
advancements are being made in time there might be totally designer drugs and surgeries but we are generations away from that - AI learning might speed it up

gene tweaking is also extremely ethically controversial - for obvious reasons

the expansion of diagnosing is of use adult individuals and their partners can make more informed decisions about having children themselves -,if your chances are higher of having ND children you can make a choice if you wish to have them - knowing the risks and potential difficulties that might lie ahead

and then you come down to resources within society, benefits, staff, housing, we have a falling birthrate and huge dislike of immigration, increased numbers of people needing support with less money and fewer people to fill supporting roles

And if it was decided to “band” ASD for access to resources and money those that just fall short of the next band up will be disgruntled and there would be much anger about that

and then politics sits under all of this - we live in a democracy that at the moment is swinging towards “I’m alright Jack” look after your own - not my problem - I don’t pay my taxes for this - whomever is in charge gets to decide resource funding - this can be changed with each passing government - once funding is removed it’s difficult to see a successive government springing in to put it back - some governments will take away funding for vaccine development which has a proven track record of working and benefitting almost everyone in society - they won’t think twice about not funding complex research that may benefit a few - vote carefully!

I understand your desire for answers @Noras but they might just not be there - bespoke medicine is coming for physical disease, but it’s not widespread yet. In time it might come for brain health, who knows, it’s very very expensive.

knowledge and research will continue
education and support of the vulnerable is important
realism is essential

Perhaps differential diagnosis would actually be helpful for both of you. A more appropriately named and updated version of the old Asperger's diagnosis might actually allow you to articulate the intensity and scope of your challenges without people comparing you to your son and dismissing your diagnosis because you present completely differently.

I agree. I have 2 autistic children. Ds(9) is non verbal, double incontinent, has very little comprehension and needs help with EVERY aspect of basic life. Has ARFID, gdd and severe learning difficulties.

Dd(7) is a genius! Has a photographic memory, has been reading from age 14 months. Needs little to no help with basic needs but struggles massively with her behaviour and regulating her emotions. Also has pica.

yet both have the same diagnosis on paper. Both offered the same standard services. They couldn’t be more different.

I was responding purely to the need to always point out that someone else's suffering is equally horrific - the usefulness of distinct terminology is absolutely nothing to do with grading or trying to say one thing is "worse" - however I have obviously explained what I'm trying to express poorly as your response shows.

It's absolutely nothing to do with being "deserving". As a metaphor - bipolar disorders and schizophrenia have significant overlap in terms of presentation but are different disorders. Saying they are different isn't ableist or attempting to dismiss one as more deserving.

Shutting down discussion with insults isn't helpful and I don't think the insults you've thrown at me are accurate.

This was actually one of the concerns raised when the diagnosis was merged. Both 'ends' thinking they'd be dismissed.

But I think people are mistaken in thinking asperges was simply a mild version of autism. The diagnostic criteria were the exact same except autism required early language development delay and autism could be had with a low iq or normal iq but aspergers couldnt be low iq. But it turned out early language development delay wasnt a good predictor of language at 18 so some getting asd diagnosis without LD would end up with better language skill than some with aspergers. It also turned out that iq is hard to measure. It was also inconsistent with the same child getting a different diagnosis (aspergers/autism) depending in the clinician.

Most of my family are autistic, high functioning mainly. One of my children, in mainstream, copes well but also has a communication disorder and is just starting to have back and forth conversations with them now at 10.

One of my siblings, a twin (both autistic) has what i would class as 'middle' autistic also dyslexic with learning difficulties who will always need support

The problem here is that people focus just on the autism and not the other additional diagnoses. Years ago my second twin sibling was diagnosed as having a communication/language disorder as a child and finally diagnosed as autistic at 19. A very similar autism profile to my child. As an adult has a full time job, social life etc. But the communication/language issues were more of an issue and were worked on in a specialist unit at the time within mainstream.

My more autistic sibling went to a special needs school with an autistic unit. Both would have now been placed straight in mainstream in Scotland.

Absolutely this.

And I know not always but it is also often to the detriment of girls as they are more likely to mask.

My DD (AuDHD) struggled significantly with school last year, which resulted in EBSA. However because she couldn't physically attend, her struggles were hidden and so the school's support was minimal.

A friend's son is currently struggling, however he is able to attend and just acts out in school instead. His struggles are visible and therefore the school is bending over backwards to support him - therapeutic provision, a small amount of 1:1 etc.

I have seen it said colloquially on social media and amongst friends x

I think most people would be surprised if they knew how many autistic adolescents and adults are, or have been, warehoused in psychiatric units.

I have a question for those who are opposed to splitting the dx or defining the dx please.

I won't hide the fact i'd like those with severe/ profound needs to have a seperate dx and use the terms profound autism or severe autism.

I've found in the past when these debates have come up, the posters who don't want the dx splitting are usually worried that if those with profound autism get seperated that the support and services they recieve will go too as their autism won't be seen as bad enough (not my view). Is rhis accurate or are there other reasons please?

I'm asking in good faith as i quite often engage in these types of threads.