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.

Autism affects people very differently which is why it isn't categorised. They even got rid of the aspergers diagnosis. For example, those masking often struggle massively, but if you're not in their life you won't know. Sometimes even if you are you won't know. It contributes to awful mental health & suicide, substance abuse, long term unemployment and prison.

I do. I have a son who has ASD but is under sensitive to a lot of stimuli and is non verbal,in nappies etc. It really pisses me off when people who are probably highly functioning ASD with a job, relationship, busy social life, etc, tell me I'm not allowed to call my son low functioning. I think we need to categorise into subtypes personally.

I'm auhd and my daughter is high functioning autistic. My friends son is autistic and globally delayed. I don't think they should both be labelled autistic as their needs are so so different

I honestly don't know which is worse tbh..... a high functioning asd child who grows up hating themselves / masking / poor mh but can hold down a job or a low functioning asd child who has always needed and received the support.

My friends globally delayed child has received far more support than my DD, earlier too. He's diagnosed at 4, my dd wasn't diagnosed until 9.

Also in regards to your sons needs.... other asd people will need similar support but might be fine one day and not fine the next. Some weeks I don't leave my house for days because I can't cope with the outside world.... other days I'm okay to go out..... I get taxis if I need transport as I can't cope on buses ect

I agree there is definitely a line between someone always needing care, non verbal into adulthood and someone who can mostly manage with support and hold down a job. I'm sure there are things that all those people struggle with but being mostly able to manage vs always needing care givers are definitely different catagories of need. I've worked with children with autism and the variation of need is massive but some children even with a lot of care will always need to be looked after physically into adulthood to keep them alive and healthy.

I agree, the issue with ASD is that there are so many traits that it covers, such a huge range of symptoms. I'm not saying that people with different symptoms don't suffer, they do, but it does seem like there are a lot of conditions that are all bunched together under the ASD diagnosis.

To me it's the same as saying that people with a slipped disk, broken leg or nerve damage in the feet all have the same condition because they are all having problems with walking. Yes they are all suffering, but that doesn't mean they have the same condition and shouldn't be bunched together under 'Can't Walk' diagnosis.

My dd masked until 14.

Shes 19 now and ticks a lot of your list. Sometimes it just becomes more apparent later. Not always less severe though.

No I don't think it needs categorising at all, people need to learn that everyone with ASD struggles but it is shown differently at difftimes ect. I was diagnosed at 30 If I had been able to not mask for 30 years my mental health wouldn't be in the floor any maybe life would have been very different for me.
My DC all have neurodiversity in different combinations and the difference in them is outstanding. They are all also very different in presentation. I only have 1 DC that is unable to mask 90% of the time due to high anxiety levels and the difference meant assessment via NHS was easier to get, support was put in place with a lot less difficulties and we generally had a lot less fights for services and support. This is because others can see his struggles whereas my eldest DC is an amazing masker and everything was a fight and still.is. They both struggle significantly one is just more visible and the other is hidden.

If I could do one thing in life it would be to educate people on internalised and externalitised presentations. My experience myself and my DC I would say an internalised presentations can be far more damaging than and externalised.people are much more understanding of something they can see than something that is hidden.

I also hate that people feel the need to.compare how "severe" someone's ASD is. It is not.like.cancer that can be categorised, the difficuare to.complex and can change based on situation, support ect, as autistic difficulties can be improved. In short I believe it is not catergorisable.

Yeah and sometimes it doesn’t. I was diagnosed late and I’m basically ok. Only got diagnosis out of curiosity because my child is autistic.

And yes @Noras this is a massive disconnect in SEN circles. My child has higher needs and the attempts of fellow parents to empathise when their kids have friends and go to school and don’t need ehcps really does wind me up. Because it’s not the same. It’s not even spectrums of the same. Dealing with a kid who is violent and nonverbal is NOT on a continuum to dealing with a kid who gets anxiety around team sports.

And those parents battling for ehcps when they don’t even know what they need because their kids are basically ok in school but they feel they should get one because their kid has a diagnosis they paid for… it’s frustrating when there is so little to go round

Try having a girl that’s autistic. I’m sick of hearing that girls mask and girls fit in, my girl has never masked, never been able to. She’s been diagnosed since 2. I read a thread on here about autistic girls and positive stories and it was all from autistic women who werent diagnosed till 40/50?! and how they are married, went to university work full time etc then mums of autistic girls who are extremely intelligent, go to grammar schools, mask fit in and have loads of friends etc whilst it’s great for them it was very sad reading it as a mum with a severely Autistic girl as they seem to be rare! My daughter is unlikely to ever be able to work or live alone. Needs constant care, can’t be left alone, age 14 and can’t have a full conversation (though can say some words) How is that the same diagnosis it’s ridiculous.

I know people who are massively affected by ASD - but depending on when/ how much support they got at various points in their lives, impacts how well they now function.

As an example, people with autism are more likely to be victims of sexual assault/ sexual violence. They're also more likely to have experienced bullying in school or the workplace. If you get support before those things happen, or good support when those things happen, you have better outcomes than those who do not get support.

Totally agree. But there is strong objection among the vocal online groups (mostly self-diagnosed).

I would really love for you to spend a few days caring for a child that you say doesn’t need categorising as having ‘severe’ ASD but has - let’s use the term for the sake of argument - high support needs. A child, say, that is nonverbal, and has violent meltdowns, and does not understand instructions or even the concept of night and day. Perhaps a child who will never be toilet trained. Perhaps one with severe Pica who eats their own feaces and must be prevented from doing so.

If you had that experience, you would appreciate just how ignorant your comments to the effect of ‘we all have our struggles, they are just different’ are.

Some struggles are harder. Having some autism is harder than having none. Having severe autism is harder than having mild autism. It’s not hard to understand.

I did not mask well. But there was also a very prevalent belief in the '80s and '90s that girls could not be autistic. I am as just the weird kid. I was diagnosed in my 20s (back when it was still Asperger's, to give my age away!). But I can see how people ignored obvious symptoms. I had to practice making eye-contact in a mirror as a teen. Because people would make fun of me for not being able to. That's often what people say about girls masking. It's not that they were good at it, so much as poor masking was forced on them.

I do understand the frustration mind! Because the stereotype means people think girls always present differently to boys. My little boy is better at masking than I ever was, which makes getting him support so much harder than it should be.

YANBU but there is a whole world out there of even higher needs, teens who are still wearing escape proof PJs so they can't access their nappies and smear, children who will never meaningfully sit an exam let alone get into university. Children and YP whose parents have their hands so full, for a full 20 or so hours a day, that they can't post about it on MN.

I don't know what the answer is. I don't think Level 1, Level 2, Level 3 is right. Our lives have been radically altered by our son's disability - and it is absolutely a disability not a superpower. But every now and again I read The Reason I Jump again and think how much harder it must be for people with profound autism, and their families. Speech, being toilet trained, being able to write or type without your parent facilitating with an eye gaze system - all privileges we have, which not everyone has. University would be quite a cherry on top.

I struggle with this to be honest. I was diagnosed in my early 50s (late 50s now) so sort of fall into the category you're talking about ...

Except I was also diagnosed with childhood schizophrenia before the age of 10 (so what would once have been classic autism prior to the redefinition where everyone's in the ASD bucket). I also had weekly depo injections for years as a teenager (to control my 'moods' but it was like living in a very hazy black hole). I suffered from almost continuous mental health crises as an adult that landed me in psych units. You get the picture.

I also can't quite understand how my condition is the same as someone who's managed to 'mask' and have 'fatigue' but a relatively normal life. It's like the spectrum is a bit too elastic. Something got lost when the DSM 5 was brought in and neurodiversity became confused with autism.

I completely agree. My daughter is autistic, but I would describe it as mild. She has sensory issues, high anxiety, and other typical autistic traits. But you’d never know she has differences if you met her in the shops etc. My friends son is also autistic, and is non verbal, and still in nappies. The challenges they face on a day to day basis and the support they need is in a completely different league to what we experience.

It seems ridiculous to me that the two of them have the same diagnosis but such different experiences of the condition. And that is not because it offends me to have my daughter compared to my friends son, I couldn’t care less about that, but more that my friends sons difficulties could be downplayed/underestimated because of the comparisons to kids like my daughter, when they are worlds apart.

It’s like lumping all respiratory illnesses together and refusing to differentiate between and mild cold and full blown flu 🤷‍♀️

I don’t want to decry people who are diagnosed later. I think that I am ND myself ( I was told by an Ed Paych who watched me for years and knew me well) However I don’t feel disabled but just different. I can’t bear driving. I struggle to write and was the last to be picked for games. I get overwhelmed in loud places. However I can cope as long as I can re charge.

My DS has a team around him and we still drop the ball. As I am writing this he is in his room literally ranting to himself. I know that he depends on adults for his entire well being - he had life skills but he was still classed as needing supervision and support for cooking. They sent a dossier to university and he’s been a handful there.

He is just completely reliant on us,his parents and one day social services and the stress is huge that sometimes I can’t sleep. I worry that when we die he won’t brush his teeth or wash ans will wander the streets talking to himself in dirty clothes.

I worry so much what will happen when we die but then think at least we will be dead so won’t know.

Yeah funny that. Funny how really - the difference between being autistic and masking and not being autistic at all seems pretty arbitrary and ignores the reality that most of all humans struggle with one thing or another.

I’m never going to believe that someone that masks has it harder sorry, my girl is 14 and still can’t use the toilet independently, needs help with intimate, care periods etc, needs help bathing, needs help dressing, can’t communicate her needs, has violent melt downs, no danger awareness, we don’t get any help at all either. Sorry but nope. Never going to believe someone that masks, has friends, went to university, works full time, has a husband has it just as hard.

Totally agree with this post. Some people totally forget that autism can come with an IQ in the bottom 1%. I'd love to know how they are supposed to be the same in functioning as someone who is autistic but has an IQ in the top 1%. No amount of support can make the bottom 1% function in the same way as someone in the top 1%.

It's difficult isn't it? DD2 wouldn't manage university and couldn't manage secondary school. Which caused her severe difficulty, depression and anxiety. But in most social settings, including her job, she seems fine and you would have no idea. I wouldn't claim she has severe needs, she is capable of so much.

OP; from your description, if you hadn’t said your son is at university I would have asked if he also has a learning disability/intellectual disability, as well as autism..

My DD has no official diagnosis of anything other than presumed Arthrogryposis (which basically means stiff joints).
Shes non-verbal, we have no idea why. We don’t know her intellectual abilities. She can’t do ANYTHING really that means she can be tested for her intellectual abilities.
Can’t use PECs or other adaptive techniques, can’t sign (can’t move her fingers or hands or raise her arms (she had fixed wrists and no biceps). She can’t stand or walk.
She also can’t swallow properly or chew so she’s gastrostomy fed.
She is presumed to likely have ASD - that’s because (and only because) she has many traits of autism (very repetitive interests, dislike of new things (like gifts or stories or films), and rocks back and forth and hand-flaps - but mostly because she’s non-verbal/pre-verbal.

I never thought I’d care about ASD categories until it became obvious that she was likely to be given that diagnosis to explain her not being able to speak etc. it makes absolutely no sense on the outside of medicine (when one is a carer or trying to get support in place) to say “she has ASD” but medically it means a specific “thing” to doctors- it gives a “cause” for the symptoms and behaviours. It’s much like saying “a stroke” but doesn’t tell you what that stroke patient can or can’t do or what their needs are.

Its not bad or poor characterisation of a condition- it’s how the condition is so variable that makes it complex to speak in general terms about - but it’s not wrong to call ASD what it is (ASD).

My dd masked until 14 then went into severe burnout for 5 years and refused education.

Yeah really funny

I have 2 sons with ASD. One (age 17) diagnosed in teens, managed in mainstream school, got good gcses, is doing A levels and has friends. The other (age 18) diagnosed age 2, now lives in supported living with 2:1 support has complex/high needs and will never be able to work, have a family or live independently. I gave up describing my eldest as having ASD as people always think they understand what that means. I describe him as severely learning disabled, which much better indicates how deeply his disability affects every moment of his life.