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.

How do you decide what's the autism and what's the co morbidity?
And actually whilst my son presents aa though he has aevere learning disabilities and autism does he ?
Or is it just that the autism impacts him do much ?

But it’s impossible to completely disconnect the two.

DS has a diagnosis on ARFID - we believe for him one of the causes of this is his sensory needs and his bodies lack of hunger cues - this is due to his autism. So although he is officially tube fed due to his arfid in reality it stems back to his autism.

He has severe anxiety but most of those anxiety triggers can be linked back to his autism so again they go hand in hand.

I could carry on just based on his list of diagnosis’s but they are not all separate to the autism they all overlap massively.

There needs to be widely accepted vocabulary that concisely describes peoples' needs.

I have a "high functioning" son with an Aspergers autism diagnosis. Having grown up with a family member with "severe learning disabities" requiring constant supervision (socially acceptable descriptors changed several times through his life) I'm well aware in the differences of care needs across the range that get put together as "autism.

Relative was diagnosed as "brain damaged" in the era where the next question was "do you want to put them in an institution?". Fortunately after a childhood in the family home, they reached adulthood at the start of smaller community based care settings and was able to spend adulthood in a home-from-home type setting with 24 hour care. With hindsight there were many traits that could possibly be diagnosed as autism, but the reality is that relative didn't have that level of self awareness and their needs were met. I wish more families had access to that level of support now; society has gone backwards.

The main thing that DS's autism diagnosis has given us is understanding and the ability to adapt appropriately. It feels awkward to engage with (the limited range of) autism services because our lives are superficially normal and a bit out of sync, and others have much more profound needs. He is in mainstream school and it is that or home education. He has potential for university education but needs additional support to reach functioning levels of adulthood, and the odds of difficulties such as burnout are higher than for NT peers.

Something that is often overlooked is the frequent connections between autism and physical health and development. DS has the common co-condition of hypermobility, possibly EDS and is also dyspraxic. There are frequently physical differences in the health of autistic people to NT people, and that is well worth awareness. DS has also had multiple food allergies, again more prevelent amongst autistic people. It's not just that he thinks a bit differently to NT people, there are physiological aspects too.

There is a disparity of power in people able to articulate for themselves and those that need advocates (usually their parents and family) My perception and DSs' perception of the way autism affects him will be different. He can advocate to himself to some degree. I see things externally from a different angle. He can't advocate for the experience of other autistic people. I can understand the frustrations of where "superpower" descriptions are wholly inacurate, often where survival from one day to the next is the priority.

Ultimately what's really lacking is medical / scientific understanding and appropriate support and education services. The language of development conditions regularly shifts, but it should be practical and be appropriate to peoples' realities.

Copied this text from another poster as it saves me rewriting.

There are many people in the autism community, self-advocates and professionals alike, who often say the 3 autism levels of support are often changing based on circumstances and environment. Level 1, 2, 3 depending on the day. That is not how the levels of support work. Yes, levels of support needs can change over long periods of time, but a support level is a baseline of support needs. If you are a level 1, and you have some setbacks, that doesn’t make you a level 2. It makes you an unsupported level 1. If levels were fluid, those on the severe side of the spectrum would be seeing some “level 1 days” and that doesn’t happen. Sure, our loved ones have better days than others, but it doesn’t change their baseline needs. They still have very substantial needs. Often just to stay alive. Which is, level 3.

Your child is more disabled because they have numerous comorbidities the same things that you have listed are also responsible for causing/contributing to all these conditions things like high paternal stress or infections in the womb

That’s isn’t what they are saying. The tool that mentions levels is likened to a snapshot in time for all levels.

I kind of agree with what you are saying but find it more useful to think of ASD as being comorbid Ito other diagnosis to explain the complexity of how it presents itself. For example, my ds has a diagnosis of ASD but he also has a moderate LD, sensory processing disorder, anxiety etc I think there is a lot of work to be done on understanding what neurodiversity is and the diagnostic criteria that goes with it.

That's not how diagnosis works.

I agree. There needs to be subcategories. I have two children (16 and 13) with asd and ADHD. The youngest is profoundly autistic. He will never go to university, never have a job, he will always have to live with us or in a residential setting with 24/7 care. He’s non-speaking with two medical conditions which I need to manage for him. He will also need high levels of care.

My son’s autism isn’t what you see in the mainstream, he isn’t the child in a mainstream school or even being part of an inclusive club or joining in a Sen session for an event. I understand autism is a spectrum but people seem to forget those who exist at the end of it and don’t fluctuate. No matter how many times I explain about how my son’s autism affects him, how he can’t have medical procedures, he has to go under GA for a dental procedure of any kind, people still don’t understand those with exceptionally high support needs. It’s extremely frustrating for me as a parent/carer.

Is there any evidence of this erosion of services?

I think that part of the issue is wanting a medical model for mental health.

The PP who gave the example of why we don't just have a category of 'not being able to walk' is because we have medical middle where there are usually clearer diagnostics, as for cancer etc. Also, it's hard to mask not being able to walk.

In mental health which includes neurodevelopmental things like Autism, ADHD but also the various psychoses, we are just not there yet- these are all diagnosed based in symptoms- there's not a blood test, biomarker that is reliable. So the medical model not so useful, at least in current state.

YANBU, if someone breaks a bone there are many different categories to define the type of break and the treatment, it’s not just blanket called a broken bone (at least by medical professionals).

Personally I look at my family who have various types of high functioning autism and adhd and I think it’s v unhelpful for both us and people with more severe needs to be categorised exactly the same. It makes the high functioning autistic feel disingenuous (or it does it my case at least) and minimises the severerity of the type of autistic who is non verbal, still in nappies etc.

Im not saying a person with high functioning autism will find life easy by any means. But they will be able to mask and cope (with support and strategies) in a way that other autistic people will not.

I think the point though is the Level 1s in mainstream or home education who are properly supported may well become functioning happy and self sufficient adults (with some challenges), with the right early intervention. So it would be economic madness to not support there where the outcome makes more sense for society. Indirectly, if they become economically self sufficient and contributing they are also then supporting the level 3s.
There is also something about society that makes it harder for level 1s now. Both in education and in work.
If I think back to my most likely Level 1/Aspie father with his 9-5 job and successful career, lots of lunch down time and on weekends, facilitated by my mother who only worked part time until we were teens, that all made a difference. The same career my father had would now demand a 12 hour day and hardly any down time and to have his lifestyle, they would both have to work full time in highly demanding careers. Which he likely would not have coped with, at least not in the UK in London with all the extra commute now etc as the young can no longer get a house in Zone 1.
My younger DCs all have autistic kids in their classes at school who are doing very well academically with the right support. It is pretty obvious that they are autistic and need that support and I think it would be wrong that they would not get that just so that some other kid gets even more spent on them. All the families are struggling. Like someone else said, it is not a race to the bottom. It is not those kids fault that the 1:1 or 2:1 care needs have become so extremely expensive.

Um- in a word, yes. Massive waiting lists, bankrupt public services, in many areas absent services specifically tailored towards autistic individuals.

I get so stressed out by these discussions. My husband and DD9 are both diagnosed autistic due to their very real differences and struggles in life.

I believe I am also AuDHD, I have no diagnosis but struggle immensely with many things including executive functioning, I get overwhelmed by simple decisions and most debilitating I have meltdowns where I scream, hit my head with my fist and against walls enough to cause dizziness, bite my hands and arms and cause significant bruising. These are triggered by masking and balancing too many things until I can't anymore. Hardly anyone sees these meltdowns now, my mum, my husband and sadly my children have occasionally seen this too. At school I would function as an intelligent student with a good group of friends but I was bullied for not knowing the unwritten rules and would break and have a public meltdown like this every few months.

I am now a clinical professional with 2 degrees and a homeowner. I drive a car, and I am married with 2 wonderful children and 2 cats.

I also work with adults with complex support needs and of course we aren't the same.

But then again my husband isn't affected the same way as I am, he doesn't experience meltdowns but he has no friends, rarely leaves the house, can only work from home as he struggles with social side of work and is unemployed right now as a result, despite being highly experienced and qualified in his field.

Neither of us are the same as our daughter who struggles to decipher any social expectations, has 0 filter and suffers hugely with lack of emotional regulation, will hit out and bite people when upset, who stims in an "overtly autistic" way (flaps hands, echolalic repetition of sounds, wears chewellery because otherwise she chews holes in her cheeks and lips etc), who runs away from us when disregulated, who would be completely unable to talk to a stranger or new person e.g. in a shop. Who has fears and phobias such as that of being poisoned that occupy all her thoughts at times. She was awarded middle rate care and low rate mobility DLA when I wrote down what we do for her, and is instantly "recognisable" as autistic out in public.

BUT who loves mainstream school, at school she has a close group of good friends who she has known for years and who accept her. She writes her own creative stories, has a reading age of 16 (she's 9) an advanced vocabulary and a curious mind. She hasn't needed an EHCP in primary but we have been advised to get one for secondary.

So, that's a really long winded way of saying we are all different. All autistic people are different just as all people are different. I don't know what the answer is but when I see some of the posts in this thread it makes me feel like we are imposters, benefit frauds or worse. Those things have me lying awake at night wondering if I've imagined all of our struggles and I just shut down.

I totally agree with you OP. My 12yo nephew is non verbal, uses a buggy and is in nappies. His life is a world a way from the students with ASD I teach in mainstream school. We had a trainer come in and tell us there was no such thing as more or less sever autism. I was not impressed.

There is a huge spectrum of ‘types’ of autism and there has been a significant uptick in older people receiving a diagnosis which has been partially driven by celebrity announcements.

It is galling though when people reach their 50s/60s then obtain a diagnosis of ‘mild’ ASD / ADHD and then use it to claim benefits ‘extra bit of pocket money’ or as a form of protection to reduce the chance of redundancy at work. No I am not being flippant I know it has happened. Personally I think it’s disgraceful behaviour as it then colours people’s perceptions and increases the challenges faced by those who are severely impacted.

The number of children registered as SEND at schools has rocketed and is crippling some councils. The issue is the different levels of support required but parents push for very high levels of support for children who are actually very high functioning. In my last years of teaching in some A Level classes I had more students with ASD/ADHD/Dyslexia than students with no diagnosis.

No we are very much aware of our privilege to be able to self-advocate. However, you seem to exhibit a level of magical thinking that has very little to do with reality.
I spent a long time working on acute mental health wards with people who have recognised severe mental health disorders. Perfectly categorised. Yet, 99% of my time was spent fighting advocating for them with social services to get some, and any, type of appropriate support be that a care package, residential placement or ongoing community MH services involvement. Slapping "Autism nr 37" label on someone isn't going to magic support out of thin air. We already have plenty of adequate needs assessment mechanisms through OT assessments, SS care needs assessment etc. The problem is not lack of labels. The problem is lack of funding.

I agree. Lots of people who only realised they were autistic as an adult as they saw posts on tik tok that resonated living functional lives with jobs, partners and dc vs some of the dc I work with who are entirely non verbal, having meltdowns due to lack of ability to understand and communicate, almost constant exaggerated stimming. I get there are struggles you don’t see but definitely doesn’t seem right to classify as one in the same

Yes diagnosticians here have 3 main traits that you reach a threshold for, that American tool isn’t the nhs diagnostic tool for good reason. You mentioned the levels of care needs it mentions. I am simply saying you are ignoring the caveat included re ( levels of care need being a snapshot in time that can fluctuate across all levels)to push your own argument.

An autism diagnosis does give you access to the dynamic risk register and the supposed hospital passport.

This always confuses me because you do come across children who are primarily non speaking, struggle with most aspects of learning but then have amazing aptitudes in niche areas of interest. I think it’s the autism that results in difficulties learning in a neurotypical fashion. the two cannot be separated when we are talking about severe autism.

Aside from waiting lists, is much of this not due to austerity rather than broader diagnosis.

You’re talking complete rubbish. For a start there is no mild autism or asd and secondly support is based on need NOT diagnosis.

There are already some recognised, related or similar conditions with a link to viruses. PANS and PANDAS are related to childhood OCD and PDA presentation of autism. Encephalitis is a viral response which can cause long lasting effects like seizures and brain damage, which can look like autism. Long COVID or post-viral syndrome is also a virus related condition which can have some overlap with ND conditions, like sensory sensitivities and executive dysfunction. Measles and many of the other "childhood illnesses" also caused lifelong disabilities, some of them related to autism. So I am not sure that viruses can be said to be increasing because if anything, we are more cautious about viruses these days than we were in the past, but it does seem like there is research happening in this area which is good.

I think the idea of "curing" autism is difficult partially because of the moral aspect of the idea of erasing people or saying that the way people are is "wrong".

But also in the case of where somebody's ability to interact with the world is so profoundly affected, what would that even look like? It could be like stroke recovery and take months or years of rehabilitation. I can't imagine there will be any future where a magic button will be produced which will make an autistic person instantly neurotypical with all the experience and understanding that an average neurotypical adult has gained by the same age. Even if the brain chemistry or any architecture could be "rewired" (I know brains do not literally have wires) then there would still be a lot of learning to do. And although it's a fictional series, I'm reminded of the episode of House where they discover that a prodigous but intellectually disabled and nonverbal musician has no access to half of his brain, and a brain surgeon can restore access, likely restoring the patient's ability to achieve normal intelligence and communication, but losing the exceptional musical skills. If "rewiring" the brain really does work like that, which seems like a possibility, then it could be distressing if someone has found a great deal of meaning and comfort in their special skill. I know not all autistic people have a "savant" type skill, BTW, but the idea that one area of the brain is overdeveloped at the cost of another area of the brain isn't completely crazy as it's an effect which is seen in e.g. blind or deaf people, where the other senses take up the areas dedicated to visual or audio processing.