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.

@Libs09D what would you suggest for those of us at school in the 70s and 80s where there simply was NOT any diagnosis available for ASD (or ADHD) for girls?

your statement is so offensive I am really struggling to understand why you want to do that and I’d really like if you could explain it to me please.

Is it their opinion that it didn't affect their life, or is it yours?

Because I realised that I needed medication and why antidepressants didn't hack it for my diagnosed "depression".

I take now stimulants, an anxiolytic, amino acids. Recognition of what causes my anger also reduces it.

I did not suggest anywhere that treatment was available or easy but I do know middle class parents, three lots, who have paid for their own because the increased knowledge about the condition generally alerted them to a potential diagnosis.

Is the increased Knowsley that's leading to the huge increase in ASD diagnoses, but increased ASD cases. And the ones missed before are obviously far more likely to be the ones who coped with the system.

Making analysis of employment of people with ASD absolutely meaningless without further categorisation.

Aspergers was a useful "label", imo it should not have been dropped without a replacement.

Knowledge, sorry if you live in Knowsley 🙃

Not not but.

People can't be neatly divided into "toileting issues, nonverbal" and "brusque high-earning genius" though, can they?

What nonsense. No increased knowledge does not increase “cases” and no going undiagnosed does not mean you coped- far from it as statistics show.

Unemployment figures of those with autism are not meaningless hence the government doing the research to provide the figures.

You can’t categorise autism as been highlighted previously and Asperger’s was dropped for good reason.

Being SEN trained doesn't make them an expert in Autism. I had an alleged SEN person telling me I can't be Autistic because I'm nothing like her undiagnosed dad. So why does everyone who actually knows me, disagree with her? One of those people I grew up with. Oh, and she's just graduated with a PhD in psychology

But this is the same SEN teacher who can't tell the difference between Dyslexia and a visual impairment. I have very little understanding of dyslexia but I know you need far more than just reading difficulties to have a diagnosis. That's my only symptom which, according to the person who assessed me, is normal for a visually impaired person. She hadn't actually heard of my visual impairment so decided it doesn't exist. There's a charity for my visual impairment and we have our own awareness day

Hi So just to get this slightly detailed thread on track. I am really not interested for this debate on who has it worse than others etc.

Whether people get diagnosed as adults it’s up to them. It is certainly true that the menopause aggravates things as did adolescence. Again this might provide hard data about the interplay between ASD and hormones as clearly there is a hole there. Also why does ASD present different in girls and boys? All other illnesses present the same eg schizophrenia biplor even ADHD?

what impact do hormones play and why ?

The broad category of those with ASD who work makes the stats on those working with ASD meaningless.

We would not expect those with huge learning issues ans non verbal to work. However there are more borderline cases where with the right support people with ASD might work with the right support / employers. However we can’t hold the Gov to account as we don’t have specific stats on that.

To my mind ASD has been used as this broad category that offers little analysis me no chance of finding a cure.

Don’t we all want a cure even if it’s gene tweaking of our kids or grandkids to stop ASD?

Also we need to hold the Gov to account on the PIP forms where so many of the questions are geared to physical issues not mind issues. There are people who have commentated whose kids seem to fit into my son’s substrate. These are the kids who might stay in mainstream with heavy support 1:1. It’s fairly obvious that they are not really going to work in the conventional sense and will have additional expenses eg PA costs for that additional cup of coffee or entry to an attraction. The PIP from focuses on making food travel etc .Where in the form does it ask ‘ can you pay your own bills organise your own shopping and make say GP appointments yourself? This is a valid question. Also can you get to appointments in a timely manner. Again these are essential aspects of life . The pip forms are tougher for ND because they don’t ask the questions directed to ND are therefore discriminatory. People have to read between the lines eg can you dress. Technically yes but we need someone to organise our clothes into say Winter and Summer and also be prompted to change clothes to remain clean. Someone needs to do our clothes shopping for us a we have no concept of old or new clothes. We might get dressed at 3am in the morning and then go back to bed as we get confused about time

can you make a simple meal. Yes but I might just decide to eat a tin of tuna five times a day for the week because I obsess about tuna so won’t eat vegetables.

Oddly the pip forms does not ask ‘do you need. Support to get to sleep’ because it’s geared to physical disabilities. People with ND might need help getting to sleep eg take melatonin, companionship pr just someone to try to coax them to bed.

Armed with more data we could take the gov to task as someone who can’t sleep at the correct time and who can’t choose clothes even if they can dress themselves and will repeatedly eat only cheese etc is clearly pretty disabled. As it is for ND it’s best to keep a diary for PIp so that how all the difficulties interplay becomes obvious.

If the Pip asked the correct questions it would”d also provide ina libel data about ASD eg how many many cannot sleep without meds or are up all night etc. How many struggle to make decisions.

The lack of more detailed data plays into the Gov hands. It also thwarts any scientific development or chance to develop treatment or cures. Why do we accept that ASD is something that is diagnosed but not cured or improved.

So for example with say inability to cope with loud noises or touch - would gentle exposure to touch increase the ability to deal with it ? Are there any nutrients that can help? Is there a drug that can desensitise the person to touch.

For my son touch is a huge issue. Personally I find that if his exposure is lessened he rapidly becomes less tolerant so it’s best to expose him from time to time to abuse journey to keep him able to travel on a bus even with a PA. Is that my own experience or is this common place. Where is the data?

Are you all not irked by the lack of any data about anything? Do you just get your diagnosis and think well that’s fine got it now?

I just feel that ASD is the forgotten people who. It comes to research. Everything is about accepting and changing the environment for ASD but nothing about treatments or cure.

They can't, but I speak with experience that it is extremely difficult to get the autistic high-earning super-analyst to engage with discussion about what is causing his (our!) problems when the label he is given immediately conjours up images of the non-verbal person with toileting issues.

I think it's holding back older people, and older men in particular, from useful help.

I also think that the huge increase in numbers of, and likely welfare payments to, people who have been able to support themselves is diverting both funds and attention from people and parents with huge struggles to live from day to day.

Always accepting that none of us can know what someone is struggling with by just looking on from the outside.

If you think the current increase in ASD diagnoses is entirely because more people are being born with ASD then we will have to agree to differ.

If you don't think that wider knowledge of the condition leads to a larger number of people with ASD who would not have been spotted being spotted then I would have to question your reasoning.

Yes Aspergers was dropped, it seems to me, largely to protect the sensibilities of the less able with absolute lack of concern for what that would mean for the more self sufficient.

Welfare payments aren’t just given out to those who can’t support themselves willy nilly let alone to those who have been previously able to. It’s hugely difficult to get PIP. I have one child who gets it and another who applied and is very high need but doesn’t.

You really need to stop posting your own hugely inaccurate theories.

Your posts make zero sense.

People can get a diagnosis at any age but I’m not sure what good it does

Someone at school in the 1970 is coming to the end of their working life so it won’t really improve their career that much.

Presumably they have managed to eat, get dressed, take medication, managed the toilet and travel for the rest of their life so it would be hard to claim pip.

Maybe they want to be able to tell their families they are ND but their family and friends would probably have guessed by now.

I don’t say this to be rude I say this as someone who has loads of pointers to ND and aged 60. Frankly if I got a diagnosis people would think ‘ well you have always been someone a bit quirky’

I could not claim pip as I can cook and clean etc. It would not help my life as I have read up on ND and realise things about myself eg I can socialise quite well but then have to hide away for a few days to recover, I hate loud noise and generally play smooth crooners, I get very ruffled when we have guests staying in my home, I hate being brushed gently. Like many women with ND I have empathy in buckets and worry about everyone I know.

And yet I have a friend with ASD who works full time in a well paid job with minimal reasonable adjustments and competes nationally at a physical demanding sport whose PIP payment is nearly £5000 a year. There was a case study in the Guardian when the welfare cuts were proposed of a young woman in almost exactly the same situation. Another thread has posts from a mother with two children with ASD who had been told she was entitled to claim benefits for both but was adamant that her second child did not require this additional assistance from the state.

So you're going to have to forgive me for questioning whether that money might be better spent on better supporting people who need it more.

I'm sorry you aren't being the support that you need for your second child.

Sorry just seen typo the word abuse was an auto change

expose my son to journeys …

I'm sorry you are unable to see the sense in them.

Ah you have a friend ( who tells you all their financial details)so it must be true .

The expected sarcasm. Though I thought you might be more swayed by the lengthy report in a left leaning newspaper.

The question must be how truthfully did your friend fill in the forms. To get pip you have to significantly struggle to cook, get around, struggle with going to the toilet, take medication etc.

I think the forms should be changed to ask ‘ who provides that support’ and the PA and carers asked to provide statements to corroborate . If someone in a PIp form claims they need support someone must be providing that support.

To be fair TigerRag I think you said you had Irlen Syndrome, which isn't recognised in the ICD or DSM.

That doesn't mean recognised strategies to reduce visual stress can't be used in school, but basing your low opinion of SENDCO in schools on not having heard of a syndrome which the WHO doesn't recognise and can't be formally diagnosed, is a bit rich.

Obviously some SENDCO are better than others, they are often going to be focused on formally diagnosable conditions because they have a huge bureaucratic/ formal paperwork element to their job, and they are likely to have areas of interest making one individual a great help to some and much less use to others - a lot like GPs...

One of my sisters had a diagnosis of personality disorder and totally inappropriate treatment. Even inpatient stays in psychiatric units and multiple suicide attemps. She hasn't held down a employee job but has been part time self employed, fed and clothed herself and had a successful marriage. Getting a diagnosis aged 50 has changed her medication, given her totally different strategies to try and has done counselling specific to her needs. So far, improved, no suicide attempts and no admissions. People can have jobs and marriages feed themselves wash etc and be a total train wreck alongside it!

That sound worthwhile

I guess I was thinking about those who stumbled through life and now getting to old go with no previous diagnosis

I think the vast majority of parents of children with ND and other SENDs are left to deal with poor SENCOs in an utterly shite system. The awful tales litter the boards and lips of professionals. Good ones are like gold. They do exist but often their numbers are too little and too late. I have experience of 80% awfully poor and 20% gold. The gold makes a massive difference.

Yes my niece is profoundly autistic. She’s 16 and minimally verbal. She will never live independently. She also has some physical issues. She attends a special school and mainly has one on one therapy - none of the children there would cope with mainstream school. The blessing is she is very happy most of the time and very affectionate. A huge worry is what will happen when she ages out of the school at 20.
This is polar opposite to my friend, also autistic, who is a single mother of three, who started and runs a successful business and is working towards a PhD. While she may mask some of her traits, my niece would not even know what that word means, nor have the ability to say it.