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 thought the idea was to add the word profound to autism…so not to take away anything, but to make the severity of the condition clearer.

My DC has a diagnosis of autism. He does not have an intellectual disability and can speak so it would be considered ‘HFA’ by some I suppose. He is not desperate to be seen as having it or to cling to a label. He wishes he didn’t have it.

He needs support with everyday living, bathroom, showering etc.
He will never live independently and his life is severely affected, as is mine as a full time carer. I am grateful that he doesn’t have profound autism. I know that would be worse and I am very grateful he doesn’t have an intellectual disability and that we can talk. But there aren’t two ends of the spectrum as some on here have implied. Being able to speak doesn’t necessarily mean you can function in other areas of life.

Thats the issue though, acknowledging that your child won’t live independently and will need you to be his carer for the rest of his life. That’s a different set of circumstances compared to those who do live independently, have their own children and get married, buy a house and hold down a job…. They are very different sets of circumstances each with the same diagnosis.

It’s not to say the latter group don’t struggle but they are significantly different levels of need.

One of the things that often comes up in these discussions is that if the most severe are separated out, those left behind are scared as being seen as having 'autism lite' or 'mild autism'. This is often used against the use of high/ low functioning as well or the use of descriptors such as severe/ profound (admittedly i don't believe this has happened on this thread).

For those who don't have profound or severe autism or who have children who don't, would you be against those with profound autism be separated out? Would you like a dx that better represents you or your presentation ie you're not profound/ severe?

I struggle to understand why some people would want the association of being like those with profound autism as I believe people would (wrongly) assume limits on competency, ability and even capacity. I understand wanting needs met but I think if it was me I'd want something that describes my presentation and abilities so there isn't any ambiguity. I know I've spoken to people who believe the association of those with profound needs makes them feel like their needs are taken more seriously.

The thing is…sometimes I think people don’t realise that some of those with what is often termed high-functioning autism (which really means no intellectual disability) may never live independently either.

It’s very different from having profound autism but can be extremely debilitating still. Not everyone is getting an education, holding down jobs, getting married. Showering independently even.

Sometimes on these threads I don’t think people realise how severe HFA can be for some people.

I do think profound autism is more severe to be clear. I am grateful we’re not dealing with that. I hope I’m not offending anyone by saying that.

I’d have no issue with profound autism as a separate diagnosis.

Even though my DC is a quite ‘complex’ case of HFA, I often find myself modifying his diagnosis when introducing him. Because ‘autism’ doesn’t tell you much on its own. I usually say something like ‘autism, the Asperger’s type’ so people know he can speak and understand them. He has situational mutism so they mightn’t know otherwise.

Yes 'autism' just doesn't give enough of a description and people have different views of what it means and some are quite offensive. I once heard that somebody thought my son would be green haired and odd like a Kevin and Perry character because I said he suffers with autism.

Yes I get what you mean and I agree.

I just feel it’s the terminology that’s problematic. I agree that being able to read and write doenst meant a child will be able to live independently as an adult and live a ‘normal’ life (have kids, have a job, have a partner etc…)

Some people will need to live with their parents forever because they can’t manage on their own. The whole family life is centred around caring for that young person and it’s left to parents because it’s not like there is any government help as there is no funding. In some areas there might be supported living options but I suspect that’s few and far between. So the whole family is impacted because when you have children you envision them moving out living their own life and making their own way in the world, having a family, partner, a home etc…

I guess what I’m trying to say is the level of support they need from other adults is profound. Imo the level of independence (or not) is what marks the difference

Yes, but it’s not just that they’re okay at home either. Day to day life can be a struggle even within the home.

Well yes and that’s why they need to live with their parents because they need support across the board within the home and outside of the home.

Still not okay even with the parental support is what I mean I suppose.

Agree and it’s these children/adults that can’t live on their own but wouldn’t get residential care either. It’s like no man’s land because they can’t make their own way in the world but aren’t severe enough that they need 24/7 care.

It’s a shame all around really and there should be more funding available to help these young adults.

I know whst you mean my son is severe enough to need residential care at some point but rhinking of my friends son who on the face of it high functioning, ie went to mainstream school, verbal passed some exams etc but needs full support to have his needs met I'm not sure who is going to care for him when his parents are not able

But it’s not necessarily completely different, and often high functioning is closer to that group than NT people. I have ASD, would be classed as high functioning, im married, have kids, have a good job (although work part time). I can’t live alone however.

So you consider your needs to be the same as a child who needs constant adult support (usually the parent who has to give up their own job/life in order to look after their child on the pittance that is Carers Allowance) to do every day normal things - such as cleaning teeth, having a bath, who will never have a relationship, get married, be able to pay bills, cook for themselves, won’t be able to have children (because how could they possibly have children when they can’t look after themselves?!) couldn’t work because to do that they would need someone with them guiding them every step of the way and what company would enjoy them? And have an EHCP and attend a special school…

Ok then, but don’t be surprised if people disagree with you

What do you mean by you can't live alone please? Would you be able to give a rough idea please as I'm honestly trying to understand? It must be a different less practical type of support than someone with profound autism i would have thought ?

What throws me is the being a parent and all the responsibility that goes with that, of you can't be responsible for yourself how do you manage as a parent being
completely responsible for another? Or do you relinquish that responsibility if so and you don't have full capacity how do you navigate relationships because anyone who you engage with romantically could be taking advantage ofa vulnerable person. I really dont expect answers I'm just showing where my thought process is.

If my son engaged in a sexual relationship there would be some sort abuse involved there it wouldn't be possible for there not to be.

I do understand that there are people with quite substantial needs who arent profound, I'm not saying that at all. It's just very very different.

God knows what's going to happen in forty plus years time when there are all these people with support needs. It scares me, i really don't want my son to end up in an ATU for years just because he's disabled.

So I do take responsibility for myself and my DCs, but I rely on my DH for a lot more than I like to admit in my day to day life. It wasn’t until my diagnosis that I realised how much. I have lived alone for a very short period of time and it didn’t go well. I cant manage money without help and I’m not good at phone calls or sorting things out so I didn’t pay all the bills as couldn’t sort payment out and got into debt and bad credit rating. I couldn’t cope with sorting unexpected bills. I can’t manage all the household tasks or understand what needs to be done and when, there’s certain things I can’t do because of sensory issues too. I’m not good at remembering to eat and drink or planning this unless reminded, I’m not good at being able to shower, don’t think to do washing unless reminded. I suffered from MH issues as couldn’t cope with everything by myself and had no one to help. Basically I was a complete mess when I was by myself. Now I’m living with my DH and also now DCs, there’s constant reminders and I follow what DH does. In the morning he gets up and showers and therefore so do I for example. He takes in a lot. My kids need feeding so I get food and cook it. I do what’s needed for my kids and the routine comes along with it, being responsible for them gives me direction and I can do that and put them first, but often it’s at the expense of myself. My DH set up pots for money and managed the bills, I’m not allowed a credit card. I would definitely be classed as high functioning but I’m diagnosed with autism for a reason.

Not the same, no, and I didn’t say that in my post. But also different from NT.

What do you mean by you can't live alone please? Would you be able to give a rough idea please as I'm honestly trying to understand? It must be a different less practical type of support than someone with profound autism i would have thought ?

@Perzival
I realise this question was for another poster but just to give you another view -

My DS with HFA (18) cannot travel unaccompanied. Is unable to use public transport even when accompanied.
Can’t be left in the house alone for any length of time at all.

Going out requires a lot of planning. He’s unable for most social/sporting events. Even just visiting the local shop is difficult. He needs to be supervised like a much younger child. Flight risk.

Needs support with all tasks of daily living eg showering/dressing. Can make toast, cereal but nothing beyond that.

His anxiety is always there, overwhelming at times, self harms then. Has had a number of complete breakdowns, extremely difficult times.

Situational mutism, reads but not at age level, doesn’t write at all. Scared of money and many, many other everyday items.

He’s on his computer now though, playing games with sibs and happy. He’s actually very bright, but people often don’t see that.

That’s what it looks like in our house. I realise it’s not the same as profound autism but ‘HFA’, ie autism without an intellectual disability, can present quite severely too unfortunately.

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.

The above was ment for overthebow

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.

@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.

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.

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.

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.