Portrayal of autistic people in films/TV

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.

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

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.

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 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

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.

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

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.

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

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.

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.

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 '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.

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.

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.

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.

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.

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.

I am sorry if I over stepped. I just know that I naturally gravitate to people in similar circumstances and can end up in an echo chamber and discussions on sm can get inflamed very easily. I think it's good to get other views than my own.

@SnowdropWhite I agree with you especially about the lack of support - we find the same even with the other side of things.

I also think that for people in your position it's vital for discrimination purposes especially with work.

I hope I'm ok to ask but how do you feel about having the same dx as someone who is severe? I apologise for asking such a personal question and if you don't want to answer it's none of my business, i'm just curious. Would you like a different dx that shows how you are but that you obviously still have needs? Many of the people who are hf I've spoken to want to be associated with the severe side as a kind of protection or so their needs are taken seriously but the people I've had this conversation with in real life are usually mums who can't work because they have a child who needs them at home (because of their own autism needs).

I think the problem is when people are struggling they don’t want to be level one. To an individual that is struggling, being told you have low support needs which in reality means you will get no support feels really minimising.

All people with autism will have support needs - it’s literally part of the diagnostic criteria. But if you function well at times people forget that.

I had the worst day at work yesterday - a massive change sprung on me with no time to process and I couldn’t cope. I then made the situation worse by doing nothing. I’m so embarrassed. But I think it helped some colleagues realise that there is a reason I have a diagnosis of autism.

It wouldn't bother me if my son's dx changed to chicken nugget condition or happy flappy disorder or purple with blue dots disease as long as the people he shares that with present similarly. It'd make life a lot easier.

Lilo from Lilo and Stitch is the only character I really see my son reflected in. At the start, she’s running around biting people and poor Nani is so embarrassed.
everytime Lilo tries to join in with the other girls, she gets it a bit wrong and they call her a Weirdo and pick on her.

There she goes was the best portrayal of life with a disabled child I’ve seen.
Generally though, I have enough autism in my life, I want to watch tv to escape from it, not see more. It’s like how everyone drama has to have a cancer storyline shoved in, so many of us are dealing with it in real life, we don’t need more.

@Perzival I see what you mean, severe or profound is clearer than a number.

I guess this just shows how we all have different thoughts on it.