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.

It's horrific and a national scandal. Scares me to death. They're treated worse than murderers in prison.

I agree with you.

If we’re using the terms severe, profound etc then my son would be described as moderate. Moderate sounds ok to me, like moderate weather - not fine but ok; a bit ‘quirky’. And yet his moderate autism (a 2, if we’re numbering 1 to 3) means he attended a special school, will never have a career and will never live independently. His needs are completely different to those who went through mainstream school, have a career and a family; and equally as different to those people who will never walk or talk and require constant care. I am unaware of any other medical condition where such varied abilities, needs and challenges are all given the same diagnosis.

No this is not accurate as there are no supports or services for autism. None.

Jesus wept. I’m mid 50s. If you think that is the end of my working life I’ve got news for you.

As to what I managed before pip - I eat a limited range of foods and tend to eat one thing until it sickens me. I often forget to eat and end up with a Mars bar and bag of crisps or similar. I was forced to eat at school. I vividly remember sitting in the dining hall at primary school being made to finish my dinner and drink of water in the horrible metal tumblers and puking all over myself.

I used to struggle with medication for pain. The specialist pain clinic were able to break the rules once I had a diagnosis and give me slow release painkillers so I only have to take them twice a day.

I often don’t get dressed and often dress inappropriately for the weather or in a way that makes me look like the weirdo. And let’s not talk about sensory issues. I remember - again at primary school- being pulled out of class and stripped to my knickers in front of two female teachers so they could examine my self harm scars and scratches.

I can’t take public transport.

I wasn’t able to go to university until I was in my late 30s. because then I could get support. It was the people at my access course that suggested I get diagnosed.

You haven’t a clue what it was like when I was a child. Not a bloody clue.

Two words.

Muckamore Abbey.

I agree but both your daughter and mine do have the same condition medically, different traits and different levels and different needs but it is a changing recognition that both boys and girls mask what you MIGHT see in public MIGHT not be what you get at home or later. Behaviour and people vary according to age, time of day, diet, other people around, sensory issues and so on - constantly in flux and changing. Girls and women were and are highly undiagnosed. More understanding of different representations and more help and support is needed. Ten years ago no one talked about masking. Ten years ago no one acknowledged girls were woefully undiagnosed.

My daughter is ASC, perfectionist, high academic performer struggled socially yet turned away time and time again for a diagnosis as ‘she is perfect at school and no behavioural issues (their words and not mine’ it took ten plus long years) . She needed help and support with food and eating and socially. And still does. And yes she is ASC and needs help and support.

One girl needing 1-2-1 caring due to being non verbal ASC who can’t get dressed with out help or be left alone has high needs just like the girl with ASC straight A* who is anorexia and self harming to cope she may not be high needs but she still needs help and support. And it absolutely the case that women and girls use anorexia and eating disorders and self harm or drugs and alcohol to cope with their ND. So we need to look at a holistic view. Someone looking in at my daughter would of said - straight top grades, loves animals and Taylor Swift and collects bones - quirky but cool and not see the massive overload, slim and fit but oh my go she was masking, the inability to ‘fail’, or may have labelled me a pushy parent wanting a high achiever! The meltdowns etc

In my experience and ONLY mine my friend’s daughter with global development delay and can’t be left alone or eat on her own for even 5 minute, 18 and needs a safe space at home and alarms on every single door and multiple doors etc and total non verbals ASC quite rightly has care although I do not think it is enough and her parents and other siblings do not get enough support or respite. She does not have enough. They is no joined up care the walking on tip toes due to sensory issues was referred to physiotherapy who said they could n’t help as it was sensory issues. Round and round they go - no joined up thinking. Always someone else’s problem or departments. Parents have done this for 18 years it is exhausting for them. It’s the old a diagnosis is great with what then - what support how do we access it.

Mine own child clearly struggling was dismissed time and time again. Got her diagnosis at university but for 18 years had no help or support(other than us paying privately) and gets minimal at university but she does know the university and courses know she is autistic and her support is someone checking in twice a week. She excels academically and always has but she needs to off load and melt down safely.

My adult step son (I think of him as my DC1 as I have known him that long) classed as Asperger’s back in the day (they wrote this on his medical notes aged 8) again no behavioural issues that caused an issue but eating sand and rocking when younger etc and obsessed with clocks (I say behavioural issues actually this more that they are behaving in an ‘acceptable societal way and not in ‘trouble’’) doing well at school got a first class degree. He used to sit and rock and watch clocks as a toddler ( I wasn’t there but DH was) but ‘well behaved’ at school and hard working but absolutely no friendships. They they don’t see that he lived at home until 25, he has no friends, none, was given no support or help. Tics massively and can’t relate to people. He works but is low and depressed and exhausting for us we invest in our time with him - he’s now 30 we listen to him and gently help him getting him to volunteer etc but he does not and has not received any financial help or anything else - nothing despite a diagnosis. He is making huge progress but by us and him working hard. The clock interest is now trains for example so he volunteers at a local steam railway etc . He is judged to not having a need by school and GP and university as a child and adult. Works in a well paid job but can not socialise with people - just does his job very numbers based. Work know he is ASC and he is a machine with numbers and his output is twice anyone else’s but no promotion and not in charge of a department as he can’t deal with others. Masks at work, and goes home and then will rock and and head bangs etc and we (myself and my DH) deal with it. What life is this for him we often say? We can’t tell usually if he is unhappy or happy, as he seems miserable but he can’t or won’t engage with antidepressants and recently has been having counselling - but all paid for by us and him. We can’t win, an outsider might say leave him he is adult, someone else might say why did you buy him his own flat he needs you for company, but they weren’t living with him and actually a flat around the corner works he wanted to live on his own as he can decompress.
But my god the change over the last 10 years, he has a degree, a job, a hobby and not friends exactly but fellow volunteers. He has changed massively but he has no help or support from SS or anyone else despite a huge diagnosis.
We need more support, more access to support and those with high need more respite and help, better training.

We also need to be clearer ASC masks other conditions, my son’s SAL issue masked his autism. My daughter’s autism masked her ADHD. ND needs more funding and more more search. When you look at someone What is their personality? What is their needs from their ASC split into many different sections and layers? What is the speech and language needs? What is the dyslexia needs? What do they need? What can we acknowledge but NOT do anything about (this is important too) what do they want and what will they accept and what do they accept and engage with. My eldest DC refused his diagnosis as a child and refused help and support etc that has changed now but it is still be tentative from us gentle support and suggestions. But does not see the need for friends - are we wrong in wanting him to be able to have the skills for a friendship or a relationship - at times he wants them and other times he does not. It is always in flux. Sometimes we can’t deal with a situation from him or him wanting to discuss Him venting about politics from 8 pm onwards and he has to stop it as we don’t have capacity. As adults and humans we only have so much to give.

External support It also needs joined up thinking. Ok you ‘function’ high low or whatever is a mindless and degrading term but I find myself using it as no other terms are around. We are made of parts like multiple sections of an orange and one section such as talking and communication you might be 2/10 but your ability to problem solve a numerical task might be 30/10. People don’t see the sections they just look at the orange outside and that needs to change.

To the people on here typing out their own experiences of their own childhood etc, I’m afraid you’re missing the point. Some of our children will never be able to achieve popping on to Mumsnet yet have the same ‘label’ as you.

There are support groups and services where i live and i appreciate this may be a postcode lottery.

Some examples i can think of:-

Specific groups for adults with autism (those who can go there unsupported and communicate - what would be hf). There are loads locally, set up and run by the people that use them.

Sensory ot/ specialised slt at both camhs and community for children/ yp.

Dieticians

Community dental and optometry for those who can't access the high street or need ga's etc

Children's/ teens/ yp activities on the short breaks that can be accessed without social care assessment although you can't access if you require 121 support. You'd have to apply for a pb and sort your own activities.

Groups or times by businesses for kids/ yp with autism.

Autism drop ins for parents with an autism team, multi disciplined. These are every two weeks for parents of kids in mainstream or units.

Multiple peer parent groups for parents of kids who aren't severe/ profound (not specifically set up that way but there are more of these parents that are able to attend and more of kids who present that way).

Carers activities/ support inc young carers for siblings. Not just carers of people with autism but any carer.

Various quiet times at gyms and shopping centres, relaxed screenings etc by businesses.

Camhs drop ins- we've not used camhs so can't comment on their usefulness but they get slated like any other area as not enough funding.

Adult day services- not used yet but one of the centres has supported living and an on sight farm area. They run daytrips as well.

Can't comment on adult mh services.

This is a poor town in the North West. I fully accept that this isn't enough and that there isn't enough funding but there are some services.

From your earlier posts i got the impression you're against splitting the dx or defining it into categories. If this is correct, why please?

I also live in the Northwest ( possibly the same town ) and there are similar facilities near me
There are a couple of charities that organise discounted actuvies and trips for children with autism
Non of it is suitable really for my son though

We are on the south coast and there are similar facilities here too. We are fortunate that DS can access some of them - he goes to an excellent day care centre and on trips to Legoland, Harry Potter Studios and similar. I’m sorry that your local provision isn’t suitable for your son - it must make an already very tough situation really frustrating.

ITbf his needs are very complex so he does qualify for respite including overnight and they can meet his needs
Im not slating it at all im glad.its available for those who can access it
These groups do try to be inclusive to all but with the best will in the world its not a one size fits all.

Ds cant access any of the short breaks things he is entitled to. Sadly the groups that would be suitable for him autism wise always say they cant cater for his medical needs.

Likewise, we have a pb for PA's and activities. We do use commuity dental and opticians.

I think it's possible we're local (Bury, Bolton, Rochdale, Oldham, Manchester, Saddleworth) Only because of what you've written previously on other posts.

That's hard. There's a chrity in a neighbouring town that was set up by the parents of a medically complex child after he passed away. I know a couple of families who use it and say it's a God send. It should be a universal type support.

I know a few families who have complained to our LA too as the short breaks are heavily autism/ adhd focused. Worth a try if you can get a few families of kids with different dx's together. (I know you may not have the energy or head space but thought it's worth a mention).

Yep very local it seems!

"Able to use above-average IQ to compensate for/hide autistic traits to some extent" is not synonymous with "mild autism"

None of those would be of use to me ( my autistic children are all adults with various quite severe needs)and don’t exist in our area anyway. Things like carers support which is about the only thing that would be useful I can predict will be pretty useless and not even remotely meet the needs we have.

Like everybody I’ve ever discussed this with including professionals I’m against splitting for the reasons listed below which include that it’s impossible to categorise and would involve a massive extra drain on resources for zero point.

I wouldnt say I am opposed to splitting or defining the dx as such. I certainly see merit in the term 'profound' as it describes something useful that needs to be described.

However, i dont feel everyone in the not profound category is the same and its not as easy to fit them into neat boxes so further categorisation is hard.

From my experience of a child who possibly has slightly more in common with a profoundly autistic person than someone who got to 40, married, job etc, it leaves him seperated from the more similar group to him. He head bangs, poo smears, his receptive language is poor, zero sense of danger, special school with 2 to 1 support etc. I dont have any issues recognising some are profound. I can see a difference and my son isnt in that group. I want thier carers to get what they need and I recognise its not thier job to shield my son. But I can also see issues down the line like pip rules changing to requiring a profound diagnosis, or access to certain schools being reserved for that diagnosis. Any change has winners and losers and most people see things through thier experience.

These are very good points. I would, objectively, support 'profound' being used to describe severity of autism. But my son's needs probably wouldn't qualify for that, and he would probably lose his EHCP and support. Hmmm.

Ehcps are currently needs led, not diagnosis led so it currently wouldnt. But who know what the future holds.

Your dc1 is in the catch 22 isn't he?

He works so people will say he doesnt need support.

But if he didn't work, they'd say he didn't deserve support because he doesn't work and as a society, people don't want to spend money on supporting disabled people.

And all the while, the support doesn't exist anyway.

life time awards are not normal unless the person is profoundly disabled

My son has not got a life tor award and he was at life skills when last assessed so not sure what they think we will be like when assessed.

His last EXhCP said needs support and supervision to cook ( so that’s 4 points) He still has a bowel issue ( we get him tk poo anywhere but the room when on holiday as we often need the hotel to call in external plumbers as their maintenance can’t fix it . This is so embarrassing and costly as we tip heavily) He is still escorted most places and has a PA to escort to university etc. his receptive language was tested about 8 occasions and remains on the 1 percentile so he records lectures etc His pragmatic has never moved from the 0.75 percentile and he needs someone to ‘translate’ meetings with his mentors or he misunderstands. We and a major blowout start of term.

But he knows so much about what he is studying just needs to learn how to get it down.

The only change has been he is better spoken and he can now chop some vegetables but not really onions - but he still will cook up crazy combinations of sirachi sauce tuna for breakfast. So when it comes to meals we need to feed him to ensure he eats properly. But he likes to cook with me and we are continuing to work on simple recipes. When he makes coffee it can be hot or luke warm/ cold - we never know. When he peels a potato it manhandles it and it becomes slimy - etc etc

The pip form has no questions about eg when you get ill do you know you are ill. Do you arrange your own medical appointments etc etc Again it’s all for people with physical disabilities. someone in a wheelchair perhaps can call a GP or dentist whereas my son would put his head out of the window for an asthma attack and forget to mention that he lost the charger for his electric toothbrush 3 months beforehand and has not brushed his teeth properly since. He would have no idea about regular dental check ups. All these life skill tasks carers have to do.

So we will have to go through the time and effort of a pip reassessment at some point. It seems a waste of money.

So to. get a lifetime award they must have described profound issues.

Frankly as I was in touch with the agency sorting my son’s PA cover for the holidays and planning to make mince-pies with him tomorrow, a further pip assessment is a pain but does not worry me. It seems a bit like an admin waste of money. I think when people are getting extensive social care a further pip assessment seems crazy. The endless assessments are a bit mad.

True - although at least that's how it SHOULD work. In practice, however, at least in some LAs, a diagnosis does have an impact, despite that. The system doesn't always run as it is supposed to!

And you're right - I also anticipate changes to EHCPs in the future! Every year that we get my son's renewed, we are relived.

If your son is able to follow a simple recipe, and cut/prepare vegetables, and actually even attend a university - I don’t think he should qualify for any lifetime reward.

I’m sure he may need support for life, but the level of that support isn’t as substantial as a young person who isn’t able to do any of the things you describe.

I would take slimy potatoes over shitty walls.

Okay, and some people with cancer have Stage 1 and a same-day operation with local anaesthetic, and some have Stage 4 fatal cases. It's still the same illness and people understand that there are different stages and levels of severity, so why does that not apply here?