Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

I think there does need to be more specific diagnosis rather than it being a broad old spectrum. The trouble at the moment is when you’re trying to get your daughter referred for an assessment, the questions are quite specifically geared to more severe presentations of autism. My daughter isn’t lobbing chairs around the classroom so I have to battle to get her more subtle struggles recognised.

How come so many people are getting a diagnosis then?
My son is 32 and was diagnosed at 3 years old, non verbal, or very limited communication and people seem to be getting diagnosed left right and Centre and living a seemingly normal life etc!

I feel the same when there are local groups for children with autism. Which level(s) of autism are they catering for?

I mean things have moved on in the last 29 years but still there's a common misconception that getting a diagnosis is easy.

It's really not and seems to be quite a postcode lottery too.

lolly07766 I do understand where you are coming from but I think there may be a general unwillingness by people in general to further label autists anymore than we already are.

As for people with autism being diagnosed and seemingly living ordinary lives, don't forget that many of us developed a masking technique as a way of fitting in/coping/managing life and it is hellish.

Im autistic. So are 3 of my children. 2 are verbal and considered ‘high functioning’. One is not. I wouldn’t say his struggles are more, they’re just different. Of the 4 of us he’s probably the happiest as he doesn’t know he’s different. Be careful of suggesting being ‘high functioning’ means you’re less disabled, it’s just different.
Also it’s really not easy to get diagnosed especially as a girl. It takes years and years and whilst you wait your struggles go unhelped. My NV child had a much easier time at school because he was statemented aged 3. My daughter didn’t get any help until secondary age and missed huge chunks of school because of it.

I agree OP.

I have 2 friends with autistic children.

The first has problems with everyday tasks (teeth brushing haircuts etc) and behaves badly at school sometimes

The second...his daughter can not even leave the house, is non verbal and rejects all physical contact.

It needs more specific categories (for lack of a better word)

problems with everyday tasks (teeth brushing haircuts etc) and behaves badly at school sometimes

You don't get an autsim diagnosis with just the above. There is likely far more going on in that child's life, that you know nothing about.

I agree. My DS has what would be called High Functioning. I was gaslit for years because he was never considered severe enough for a diagnosis and was/is a master masker. It took him having a breakdown for us to be taken seriously. I fought hard and he was finally diagnosed last year.

He is academically capable, well behaved and quite sociable but has many, many other struggles due to his Autism, yet cannot relate to other autistic kids because he feels they are different to him. He cannot relate with NT kids either. I really wish there was a more accurate description for DC like him. Many with severely Autistic kids seem to think DC like mine have it easy as they are able to lead fairly normal lives - and I agree to an extent - so I don't think it's fair on them or on DC like mine (who DO struggle and do need tons od support) to have a blanket label of Autism when their needs are all so massively varied.

I am autistic. I live a seemingly normal life. My child is autistic.

The best way I can describe it is that my child and I have a lot of scaffolding and support around us to allow us to live a 'normal life'. We do live a normal life compared to your child, I understand that. But our life is not by any stretch of the imagination normal compared to someone who is not autistic. Anxiety attacks over leaving the house, panic attacks when out, stimming and ritualistic behaviour, eating disorders and compulsive behaviour are everyday things in our house. My son copes well at home because I am similar to him and can manage his behaviour. School cannot. I am dreading him going to high school.

It's not easy to get a diagnosis BTW. My son was not assessed until he was 8 YO. I was refused an assessment on the NHS because to quote yourself 'I am living a normal life'. The psychologist who assessed my son advised me to get an assessment myself after interviewing me for my son's assessment. I had to pay for my own assessment privately and even then I doubted it would happen.

Please just accept that you have your diagnosis, and others will have theirs. Being seen as relatively 'normal' but being far from it ie through masking has ruined my life. As a fiftysomthing woman who was compliant and obedient I have been living a nightmare, misdiagnosis, depression, anxiety, etc. Has meant that I have never and probably will never get the help that I need .

God, these threads are awful.

I know there are many threads concerning this subject, I've just read one now.

So why post yet another one?

My daughter is 13 and has been waiting for assessment since she was 9. She is high functioning, bright but masks very well.

I wonder whether I am too and have thought about getting an adult assessment,has anyone managed to do this on here?

I agree. There is more you don't know.

My son is 'normal' to the outside world. Confident, empathetic, smart and kind. He goes to mainstream school. He described by people who don't see our home life as 'normal' and they are surprised at his diagnosis.

They don't see the fact that he won't leave the house in the morning unless he has performed the same ritual of daily tasks in the same order everyday (and needs to restart from task 1 if one task is done out of sequence + the meltdown that accompanies this).

They don't see the 2 hours he spends stimming in the back garden after school everyday to wind down.

They don't see the panic attack he has every week before swimming class.

They don't see him following me out the house when I put the bins out or him following me upstairs cos he doesn't wanna be on his own downstairs. He is 9YO. His friends stay home and play out alone. He refuses to leave the house without a parent.

They don't see that he will only eat very specific foods and physically wretches (and has a meltdown) if someone opens a packet of cheese and onion crisps in our house.

Like I said in my previous post, it's scaffolding.

I have thought about this often as we have 3 very different ASD children in the family. Apparently I'm the 'lucky' one as I've got the 'high functioning' academically able child. The thing is the other 2 have comorbidities and my DB has had to push to get those diagnosed. One has ASD and ADHD. The other ASD, ADHD, GDD and dyslexia diagnosed so far. Actually the ASD is similar in all of them. The interaction between the ASD and the comorbidities in the children in my family makes all the difference. I'm not saying this is true for every person with ASD but how many children severely affected by ASD have actually got multiple comorbidities that are ignored because once you have that diagnosis everything is ASD and no one is going to investigate anything else further?

It's complicated, maybe it should be split further but at the same time we shouldn't dismiss people's struggles and turn it into a competition of who is the most disabled.

I'd love to know what benefit I get from being labelled autistic. Please do tell me.

Tell me how it differs from freak, weirdo, retard and all of the other labels I have been given throughout my life because of my behaviour.

We don't get any benefits. I don't get any special consideration at work because I have not informed my employer (I'm more likely to get sacked by telling my employer TBH). Neither my son or I are medicated. We get no support or involvement from any outside agency. My son gets to do an extra round of forest school and goes to Lego club.

That is the grand sum of the ways in which we have benefited from our diagnosis. Other than having a better understanding of our own behaviours and having a very short way of explaining to other people why we are a bit odd.

I agree. My niece is autistic. She has some words but at 12 it is very apparent she will never live independently. She goes to a specialist school. She has very different issues than a friend of mine who is autistic but to anyone seems fine - three kids, a PhD and her own business.
I'm sure she has developed masking, but when she talks about it so much just seems what anyone deals with and is certainly nothing like what my niece has - she doesn't mask as she has no conception of what 'normal' is supposed to be like.

I agrée OP. Autism covers a large range of disabilities.

i used to say my sister had asperger syndrome but then Asperger turned out to be a fucking psycho Nazi. So now I don’t say that any more. I say Autism instead. But then she lives a reasonably normal life. She has a degree and a full time job, her own job and has friends and good connections with family. Completely different scenario from your child. you’re right in that one word shouldn’t cover bit scenarios.

I think that there's a common misconception that high functioning=not that bad when actually all autistics have their own struggles.

We were gaslit by school about my eldest. They refused to accept the difficulties that she had. She was diagnosed at the age of 8. At the time, a stranger wouldn't notice her difficulties because of her masking.

She has a spiky profile. Academically amazing at Maths and English but needs help with dressing, can't cross the road safely and now that she's a bit older members of the public stare at her when we're out and about.

To the untrained eye, she's high functioning but she has significant difficulties and attends a special school.

Never heard so much nonsense in my life.

there are too many people with a vested interest in identifying as autistic.

What? You mean people can IDENTIFY as autistic? I really need this explained to me @Shelefttheweb in very simple terms. Thanks in advance. Oh and - what advantage is there?

Bloody hell, I think I have entered a strange reverse world.

This same thread has appeared and disappeared so many times .
I will say the same thing that I always say
OP, there is no such thing as mild autism. You are autistic or not. What people call "mild" autism tends to mean "has little impact on those around the autistic person".

My boy is in his 20s now. You would say he was 'mild'. He spoke at the typical age. He got into grammar school. He has GCSEs and A levels. His behaviour has never been challenging. He is extremely knowledgeable on a wide variety of topics. His IQ on testing was in the top 4%.

He also gets highest Pip for both. He recently had his first bath in about 4 weeks. He hasn't had a haircut in 6 years. He spends 98 percent of his time in bed in his darkened room. He is completely dependent on us for his daily living skills; even to apply for benefits would have been beyond him. I would estimate he takes on average less than 500 steps a day. Recently he decided he fancied McDonald's and walked to the nearest McD, about a mile away, for the first time in about 3 years. The slight issue was, it was 3 am and he neither took his keys, or his phone, or thought to tell anyone.

Don't make presumptions about the impact of others ' autism. A theoretical lack of learning difficulty doesn't always mean "mild autism".