Portrayal of autistic people in films/TV

Hope you don’t mind me asking but does he get PIP? If so what rate? The reason I ask is my DS sounds quite similar to your DS in some ways (though not others)

Mine is 13 and has the reading of age of a 6 year old, but is able to communicate using language easier - though not reciprocal language, it’s more him talking at me and repeating himself. I resonate with what you say about him being relatively ‘easy’ to look after, in that he just wants to be left alone with his IPad - but as you say, I could probably pop to the shop as he wouldn’t move, however he wouldn’t move in an emergency either so he can’t be left unsupervised.

I wonder what will happen when he’s older. He couldn’t work as who is going to employ someone who can’t read or write, follow instructions and would need someone watching his every move - why would they hire two people when then can just hire one?

What the heck will happen financially? This is what scares me for the future?

I think the original op is right, that there are two popular portrayals of autism which are variations of Rainman or Sheldon, with a move to Sheldon style being ubiqitous. most autistic people are like neither.

I found myself saying to the doctor the other day 'my son has autism. Its not profound, he can walk, talk and use a toilet but he isn't sheldon. He isn't going to university and holding down a full time job or living completely independently, he has a ehcp and is at a special school'

Its very long winded!

Then I see all these debates between parents of profoundly autistic people and married 50 year olds with jobs and think 'nope, cant contribute to that, neither apply'

As far as I know I'm not autistic, but I'm very much like "high-functioning" ASD caricatures on TV. My friend says I'm basically Sheldon. TV is full of these simplistic representations of people.

The ins and outs of autism weren't really known by the general public until fairly recently. When I was growing up, I had never seen someone without a profound learning disability described as autistic. It will take time for TV to catch up.

At work they automatically put in place reasonable adjustments I didn’t want, didn’t ask for and don’t need. Yet they have ignored or refused other adjustments that I do need and have asked for.

Yes! It’s really nice that people are trying to help, but just ask the person or their carer rather than assume.
Professionals do this too ime.

Oh I didn’t think your question was overly personal, no need to apologise.

I don’t get put off or dislike the association with more profound autism but I think that’s probably because I like all the people I’ve met with profound autism and feel comfortable with them. When I was a teen I knew a girl with PDD-NOS which I think would just be autism now. We just used to sit together at a community art class and she would grab my hand. Her carers said she liked me, it was the highlight of my week seeing her even though we never spoke I felt like we had a connection. If that makes sense. I do agree with you though that it would be more helpful to have a separate diagnosis.

I do get frustrated when people assume they know my needs because they know I’m autistic. At work they automatically put in place reasonable adjustments I didn’t want, didn’t ask for and don’t need. Yet they have ignored or refused other adjustments that I do need and have asked for.

I’m so sorry to hear about the safeguarding issues with your DS’s PAs! And also about your friend’s son and the abuse in the home he was in. It is absolutely horrific that this can happen to vulnerable people. And so worrying.

You are right, it is a very different kind of autism and I think many of the public are more familiar with the Sheldon type of autism now. It is a real problem. I hate the neurosparkly depictions too (thanks for the name @SnowdropWhite, sums it up well). It definitely isn’t a superpower for so many and, to me, the concept seems sort of insulting even as a suggestion. As a generalised suggestion I mean. It’s great it someone sees their own autism like that, but it’s not okay to extrapolate imho. And people do.

I also don’t think it fair when people try and separate mental health or learning disability from autism. I know in DS’s case they are completely intertwined, his autism and MH.

Wishing you and your DS the very best and thanks for the helpful suggestions upthread too.

I know a few young autistic men that sound similar I feel sometimes they fall through the cracks ,their needs on the face of it arnt as clear
Whereas i have always had support from various agencies becsuse of my sons needs, there is nothing for those with similar needs to your son it' can't be easy.

My son has what I call ‘high support needs’ autism, in that he requires a high level of support. I don’t really know how severe his autism is, no one does because he can’t or won’t communicate.

Mainstream school wouldn’t have him because he wouldn’t engage and would just fall asleep. He did the same at special school (when we actually managed to get him there) and left with no qualifications. He’s 17 now and doesn’t leave the house. He’s very underweight because he doesn’t eat. CAMHS have stated they don’t believe he has any MH issues and that this is all autism

He just lives in his own world I guess. He’s very easy to look after on a day to day basis because he’s very undemanding. Always has been - never cried for feeds as baby. Never expresses any needs, I never know how he is feeling (I’m not sure he does either). He mostly communicates with me via text message.

He’s hyperlexic, had a reading age of 17 when he was younger than 10 but it’s not clear whether or not he’s understood what’s he’s read. Most of what he says verbally is actually him just repeating, I’m not sure how much is his own original thoughts. Very little reciprocal conversation. He has no interest in money, I’ve tried to get him to open a bank account but he refuses.

I don’t like to leave him home alone, even though he’d likely be quite safe because he wouldn’t actually move or do anything but if there was an emergency he also wouldn’t move or do anything!

I don’t know what to do with him really. I can’t see him getting a job or anything like that. He shows no interest in having any sort of relationship with anyone. He doesn’t really show much interest in anything at all.

If your son doesn't have a diagnosed learning disability do you mind me asking what type of school he is in?
I'm not sure anyone has ever said my son has severe learning disabilities, but he's in a special school for children with severe and profound learning disabilities, and he's working at pre school levels, and he's 15,so it's obvious to everyone he has
He also gets HRM under SMI rules.

Hi, I'm glad you replied, I was aware I'd asked something overly personal, I'm sorry for that.

Yes, I'm not overly fond of neurosparkly/ spicy either. Im not sure i can't think of any other disability where it's played down or glamourised so much on social media. I don't think it does anyone any favours apart from maybe the people who set service budgets eventually.

Do you ever get put off or dislike the association of more profound people with autism? I'm thinking about work really more than anything else. I wouldn't want someone making assumptions without really knowing.

I wonder because I'm very clear about wanting a separate dx for people with severe autism so they're needs are easily conveyed. I just wondered if someone like yourself ever thought it in reverse and didnt want people assuming you were less able than you are?

It’s not something I’ve ever really thought about. I’ve always felt that autism as a diagnosis fits me well in that I have difficulty with social communication and restrictive and repetitive behaviours, as well a lot of sensory issues.

My differences were evident from around 2 years of age but my parents didn’t know anything about autism and I guess less was known about autism in girls. It was always just said that I was ‘neurotic’, I also had a diagnosis of dyslexia/dyspraxia and any issues with executive functioning were put down to that.

I would say the type of autism I relate to least is the ‘neurosparkly’ type you see on social media.

It’s frustrating when they are suggesting it’s similar and you’ve been really understanding in your posts. It makes me angry too.

I agree that that life can be hard for others but tbh, what the pp said about needing her partner to help, I can completely relate to that myself. It’s a bit of a joke in my house that I couldn’t cope with ‘life admin’ etc if he left. I feel exhausted, drained and utterly overwhelmed with everything, yet I don’t have autism…

Yes I fully agree thats why i tend to end up arguing on these threads. I also understand though that some of the people who I'm arguing with maybe can't see others situation because they struggle with theory of mind.

I do get angry when someone as pp above says they have high support needs in a similar way to my son even though they are married, have kids and a job. Needing reminders, financial help etc are still needs granted but yes I think they are a world apart.

This is what blows my mind, how anyone can read what you’ve written and then compare their independent lives to the lives you and you DS live. There is absolutely no comparison and one is significantly more difficult than the other. There stress you will be under worrying about your DS’s future will affect t your MH too no doubt.

No unfortunately it doesn't most people just assume he has very little understanding of anything. He doesn't need a sunflower lanyard because his autism isnt hidden, hes an adult size, bigger than most, his autism is loud and flappy with lots of squeezes and various noises, growls and hums. If he's upset he doesnt just cry he wails, it's gut wrenching and we dont always know what's wrong it could be a nightmare, tooth ache, head ache, a dead leg......

We did have one amazing slt who introduced aac (it's only as useful as his understanding or his want/ understanding of communication). She told us to always assume competence so every attempt to communicate, every button pressed has meaning and should be acted on. I took this to heart and that's what we do. It has opened a different world. He does have some amazing skills- he can read nouns in other languages and match them to the correct pictures/ words. I cant do this, can you? Most people cant but it isnt really useful and knowing what some of the words are doesnt mean he has an understanding of them.

We have furniture attached to walls, a sensory room in the house (we took extra out on the mortgage when we moved to pay for it), we have special doors like big child proof gates, an adult special swing in the garden, visuals all over including the toilets in hope/ to help him/ encourage him to try himself, we cant attend autism groups for teens because he has the wrong type of autism....

Being profound doesnt mean he doesnt have a personality, hes incredibly loving, kind, funny, engaging, hes great company. He can do some amazing things and I'm sure he understands a lot more than what people give him credit for. He has lots of needs but I dont want to outline them here, you can guess most of them.

He could never be responsible for anyone else because he wouldn't understand, he couldnt even meet his own basic needs in any way or articulate them, he wouldn't even know they needed to be met let alone describe them.

He requires waking care because he doesnt sleep much. 1:1 inside and 2:1 in the community or when out with school. We had pa's but there was a safeguarding issue this year and they were investigated by lado, then fired and put on the dbs check list so they cant work with vulnerable people ever again. We only know this because of cctv my ds couldnt tell us and we wouldn't have known too. No behaviour change either. Hes approaching adulthood. He requires more help now than when he was a baby or toddler and it just gets harder. The future scares me to death.

My friend has a child who is now an adult, he was sectioned and placed in a group home miles away - he has limited comms too. She faught to get him moved closer to home. Its now come out that there was abuse carried out in the home while he was there, she has no way to know if he was abused. She will never know what happened to him.

There is a world of difference between the above and some of what other posters have described as high support needs and thats just some of the practical stuff (I know you haven't said your child is profound).

This is spot on, regarding the language and ‘terms’ used, such as learning difficulties as opposed to learning disability/intellectual disability. As you say, the terminology is used interchangeably, even by professionals, when they have very different meanings.

The average persons often thinks they are the same, but you only know they have different meanings if you’re in the position where you need to know. As @Perzival says, having a diagnosis of learning disabilities opens up more help both physically and financially.

Thank you. Agree that the mh can’t be separated from the autism. He does have dyslexia, so learning difficulties in that sense as opposed to an intellectual disability. This terminology is also confusing as it varies from country to country and also within the UK between medical and educational settings.

Camhs were a joke 😞

Yes. I think that is one of the differences with profound autism. Sometimes people think DS is NT at first, sometimes they think he’s more disabled than he is with no understanding etc. It varies, and he varies too. I think it doesn’t vary like that with profound autism?

I agree whole heartedly about the levels and I think i posted that earlier for very reason you've given. I always say my son has profound or severe autism to get across how he presents. Eg he's an older teen but watches bits of in the night garden and hey duggee etc. They're often on at the lowrey and even though he's registered for their access scheme i have to still describe his presentation so that they understand why a teen with carers would want to watch that type of show (they usually put us in a box so we're out of the way). I think saying level 3 would just confuse them even more.

Lots of people do use it in the sense of lower support needs now, but that’s not the original meaning so it is confusing.
https://pubmed.ncbi.nlm.nih.gov/31215791/

It’s no use using terms like level 1,2, 3 support needs to the general public either. They’re fairly meaningless unless you know about autism.

Also i don't envy you having to navigate non existent camhs. Severe mh is no joke but in the same vein that mh in your sons case cant be separated from the autism as in what is mh and what is autism the ld is the same.

I really do wish you and your son well and hope he finds strategies to help him cope and hopefully live an independent or as independent as can be life.

Maybe this is a difference with profound autism along with capacity - there is no hope of change or strategies? Just musing because there is differences, it's just how to word it.

You should have a look at how learning disability is dx'd. My son never had the ld dx only autism. He has some amazing skills and his wiscc although still mainly very low was spikey. The private and very well known ed psych (PK) wouldn't score his iq because of the differences in his profile. However I have reluctantly come round to the ld dx. I'm sure there are threads on here where I've argued my ds doesn't have ld - he doesnt he has severe autism but the truth is the ld dx will help him in the future as he moves into adult services.

The other thing to look at is the case law around dla high rate mobility and severe mental impairment (i know the language used is horrific) there is case law that states a child can be considered fir hrm under this with a high iq if the iq isn't applicable or used in everyday life.

Please don't think I'm trying to insult or take anything away from your son and I'm definitely not saying he's profound. Im just throwing some stuff out there that may sit in the back of your mind and may or may not be useful.

@Perzival It’s anxiety that causes the mutism. In those situations he can’t use aac either.

Anxiety and mh issues are why he can’t be left alone and why he struggles with daily living tasks. He has very poor executive function as is common and is emotionally very immature, also common.

DS was in mainstream school for a while but couldn’t cope. Anxiety again. Cognitive testing showed overall high iq but a spiky profile.

He just doesn't sound high functioning to me or what I perceive as hf.
High functioning autism simply means that someone doesn’t have an intellectual disability. It may be understood to mean something else, ie someone more capable of daily living, but that’s not actually what it means. I do think people misunderstand what it means sometimes and that results in conversations where people are talking at cross-purposes.

If he can use computers would he be able to access aac especially when mute? If so it could be life changing. Does he need to write? Can he type of use voice to text?

You say he doesnt have learning disability, if so what is it that means he can't be home alone and has to watched all the time? I'm asking because my son was never dx'd with ld just severe autism. We're actually asking for ld to be dxd ready to move to adult services because he will recieve better more consistent support under this team than under the autism team. Ld actually takes account of skills of daily living it maybe worth you looking at for him because he may well fall under ld or is it mental health needs? (People with autism struggle to get their mh needs met).

Some people (not many) with profound/severe autism have splinter skills. They can do amazing things in one area but can't really use it or understand what they can do. Eg hyperlexia, they can read anything but don't understand what they've read- it's useless the man that can draw maps perfectly after seeing somewhere for a second but can't understand why he needs to communicate and doesnt.

I get that he isn't as severly impacted as others but understand he's still impacted. If I'm being honest I wouldn't have described your son as hf but that is my opinion and I'm not medically trained or his carer. He just doesn't sound high functioning to me or what I perceive as hf.

I'd describe hf more as the lady above with a career, husband and children and little external agency support and full capacity. Your son sounds like he'll require external support into adulthood and maynot have full capacity of I've interpreted what you've wrote correctly.

The above was ment for overthebow

I think the putting your kids first at the expense of yourself is completely normal xx

Have you ever spoken to anyone in real life about this? I can truly see that you're vulnerable and I don't feel for you as a woman.

I know you say you think you're closer to a profound person than nt but I would disagree. You can put strategies in place and with minimal support you can be productive (responsible job) and be responsible for others (your children). You also have capacity and this is for me the biggest issue. You can make decisions and choose. Someone with profound autism will never have capacity. If they're lucky their parents orsomebody that loves them will be granted deputyship for them (like poa but where they dont have capacity to start with) of they're not lucky the la/ court of protection take responsibility for them. They have no agency over themselves and could never be responsible for another let alone a child.

I think the lives of profound people and their families isn't completely understood by the majority of people. A tv programme showing this with an adult may actually help (trying to link to original thread) but would be very hard to watch.

Could you use alarms as reminders for things like showers etc if you had to? What would you do if your husband was away for whatever reason? What would you do? Is there someone else who could help you with finances if you ever needed space? You do seem very vulnerable and I really hope you have lots of other support around you and plans or options should you need them. Would it be an idea to talk to a social worker and explain what you've put above?

I wonder if more women are being diagnosed now as many don't have the old traditional life of leave parents to get married, man works and pays bills, wife has home schedule to fulfil. Whereas the old 'traditional structure' helped. Similar to how school structure has changed and impacted dx in kids.

I've just spoken to my husband about this and he commented that I'd divorce him if he even dreamed of telling me to put a wash on.