Portrayal of autistic people in films/TV

[AutisticHouseMove]

I was diagnosed as autistic in my early 40s.

When I was younger, the only real portrayal of autism I was aware of was Rainman.

I also know there has been criticism of that because it portrayed an autistic man as a 'low functioning' savant.

Over recent years, I've noticed a prevalence of a different type of autistic person. Usually working in some kind of solitary role requiring a high level of intelligence (eg scientist), who is brilliant/the best at their job but completely lacking in empathy or social skills and getting it all wrong when they have to interact with colleagues or friends.

They're rarely identified as 'autistic' but there are hints along the way, comments from other characters about how 'weird' or 'difficult' or 'awkward' they are or how curious it is watching them trying to interact with or behave like 'the humans/earthlings'. Or other characters have to brace themselves against the tone deaf comments. Basically, either endearingly odd, a bit of a dick or both.

I don't know. It just makes me feel uncomfortable and embarrassed even when I realise this character (and they're recognisable because they're all portrayed in the same way) is supposed to represent me. Or is this really how NT people perceive many of us to be?

YABU - the portrayal of people with autism in films and TV shows is pretty much how I experience autistic people in real life

YANBU - you have a point.

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.

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?

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.

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 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.

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.

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…

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.

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?

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.

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.

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.

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.

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.

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.

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.

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'

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?

He goes to a special school for autism. Also working on p levels and he gets hrm under smi (he has since he was three and had hrc on it's own before that). He will get a formal ld dx in the next few weeks as I've asked for it to be formalised for adult services. Our LA has a separate LD team in adults that can help with hospital appointments, community dentist/ optitions etc

That sounds really hard for you both x there is nowhere near enough support out there.

My ds also has some echolalia, it's quite common apparently with autism and like yours he doesnt understand what he says - i like to hear him say it.

Camhs are awful arent they?! They shouldnt be able to do it as how do they know and if they'd see another yp without no dx they should see one with for the same thing surely.

I recently found our carers association and they've been amazing. Maybe see if you have one locally (i think you should). They maybe able to support you with a carers assessment and appointee bank accounts but even just a chat to see how you are every now and then.

I hope it's ok to say but I read on mencap that you could have your dx placed on the ld register at the GP without a ld dx (i know youve said he doesnt have ld but the amount of support he requires may put him in that group). You may want to do this or have the conversation so you can make appointments or get results or talk on behalf of your ds. They may not let you otherwise because he wouldn't have consented.

https://www.mencap.org.uk/advice-and-support/health/learning-disability-register

Are you suggesting you don’t think I have autism? It’s a lot more than just not being able to do life admin very well or feeling a bit overwhelmed.

No, I’m not saying you don’t have autism, I’m saying I feel like you describe at times and I don’t have it. I feel very overwhelmed not just a bit…..

Financially... I'm just getting my head around most of this so if others know better or can correct me pls do, itll help me as well.

At 16- you need to apply for credits only esa for him to establish he cant work. You need to apply for his pip as well. You should get a letter before his 16th birthday to start the process. If you fill it in on time you get dla until pip decision is made. You also 'should' open an appointee bank account if he doesnt have capacity to look after his own money.

Also see the mencap link above about Dr's ld register. This is from 14.

If youre on uc you can keep him on your claim until hes 19 or leaves education (anything above a levels if that's appropriate and he comes off) and apply in their own right. You should have already established that he cant work at 16 to make it easier.

Of youre not on uc you can put a claim in for him at 18 (i think) as above with established whether he can work or not. I think though you have to do this in the Summer holidays before he starts a new course (same for the esa).

If he has a social care package at 18 they may start charging you/him for it. From what I've gathered diff LA's have different ways to work it out but generally it doesnt leave the yp much.

Also as he moves to adult services make sure you get a carers assessment in your own right. Look at local carers services (you maybe able to do that now).

I plan to keep my ds in education as long as hes happy to go as long as possible - hopefully up to 25. This is so he has somewhere to go and other people in his life other than just us, obviously to progress him as much as possible but to keep the ot/slt provision and anything else in section f of his ehcp.
ffwe're having to get ld formally dxd so that he can access some adult services. So if ld is applicable at whatever level thats something to think about.

Ofcourse the gov could change all this at a drop of a hat if they feel like it.

Just when you think youve got to grips with the sen system you have to get to grips with this. Im sure they make everything really hard and awkward so we give up.

Thank you so much, your info has been invaluable. I’ll be taking screen shots of these replies so when the time comes, I have your guidance.

It’s a sad state of affairs that you have to find this stuff out by those that have been through it, because no one tells you. My DS attends a special unit and has his EHCP review coming up and school are wanting to change it as they say he has more severe needs than originally assumed (I guess because he’s getting older and it’s becoming more apparent the gap is widening) he gets DLA now and mobility and I get Carers Allowance. I’m terrified for the future.

@Glassmatt It could all change or be wrong as I'm still getting my head around things.

I do think the best place to get info is from other parents and thats with everything.

The school sound like they're trying to help of they want to update his ehcp to show more needs. It may be a really good opportunity to get the ehcp tight of it isnt already (all needs detailed in section b with provision to meet each one in f that is specified, quantified and detailed) if this is telling you to such eggs please ignore if not check ipsea and sossen websites.

The other thing we've had to sort out is wills and a disabled person's trust. If your child will inherit (possibly a share in a house) when you die you can have it put into a trust so it doesnt impact their benefits and can be used in addition to any support they get. Otherwise the la can look at using it to pay for support.

The other other thing is deputyship. This is like power of attorney when the person doesn't already habe capacity. There's one for finance and one for well being. You have to apply to the court of protection. The wellbeing one is harder to get and you may not need financedepending on circs.