Portrayal of autistic people in films/TV

How weird. I am upset( for good reason)that somebody thinks it’s ok to dictate that their child is impacted by autism above and beyond anybody else when they have no right or basis to do so.

When I think of autistic TV characters, I think of Saga Noren, the heroine of the Scandinavian crime drama 'The Bridge'. There's a lot of talk about how she is 'different' but it's not explicitly said that she is autistic, even though she clearly is. Much as I loved the series, to me it seemed at times as though her autism was exaggerated and treated as a joke, but apparently Swedish autism charities loved the portrayal.

You already stated your children can speak, read and write. It's pretty easy to establish.

DSM makes it clear that support needs can fluctuate hence it being impossible to categorise people. DSM has no official status in the UK for good reason.

Why does it upset you that somebody else's child is more impacted by autism? If that was me I'd be glad.

You do not know your son has more needs. 2 of mine have substantial needs and would die without them.

Where is she trying to pigeon hole ?

My dc wouldn’t have fitted in to Asperger’s, they would still have been diagnosed as autistic.

When someone gets a dx, it is by some manual of some kind. The dsm is understood and in some cases used in the UK alongside the ICD (main manual used in the uk for dx).

If you look at the visual i posted you will see exactly the definition used by the levels.

Your child can speak, read and write?! Yes my son has vastly more needs. Im not denying your child has needs they're just very different and nowhere near what my son has. This is exactly the problem with having a one size fits all dx.

She doesn’t know anything about anybody else’s kid and their needs but thinks she can pigeon hole. She can’t.

That's why I said that we were all stuck with 'just autism' diagnosis for now since the Aspergers was removed. And that I hoped that things moved on swiftly with more understanding and better dignostic crieria / further understsnding of co-morbidities. Obviously we all know there are differing levels and needs.

I also said that I didn't minimise your child's life struggles. You should never have to do that, and I deplore anyone who makes you feel like that. God knows myself and my family went through all of that with my sister.

My level of intelligence and ability to write / speak / post replies may be both a hindrance and a blessing. Again, perhaps not as outwardly high in need, but the other co-morbidoties that I have are worrying, disabling and life limiting. I also worry for my child that I might not be around for as long as she needs me. I have no partner, no support, and no understanding from anyone. We are totally alone.

My daughter also has many other co-morbidities and physical health problems. She won't survive without me and that's a worry I carry every day (as we all likely do)

Uktimately, we are all in this together.in a way, but because we all have different circumstances, we perhaps don't quite fully understand each other, and thats ok. It's exhausting, frustrating and upsetting all round though.

A PP mentioned the 'level 1's' and the self diagnosed which is the only reason I included that in my post.

I wish you every kindness and understanding.

That's not what the poster has doing and you have no right to tell her her son doesn't haven't profound needs ,you don't know him or anything about him .

So your son gets a bespoke diagnosis and everybody else gets thrown into “type 1”. There are no levels of autism in this country for very good reasons. It’s impossible to pigeon hole. Autism is diagnosed across several traits. The type 1 you mention is referring to support needs in the US diagnosis process. There are 3 support need levels and my dc cover all 3 levels. You have no right to tell everybody your kid has profound autism and their child does not or that your son’s needs are vastly more than mine or anybody else’s. My dc can speak, read and write. They are all severely impacted by autism and 2 have 3 the highest and substantial support needs.

Changing autism dx pic. It may have to get ok'd by mumsnet.

The thing is we're not stuck with 'just autism'. Diagnosis criteria and names have and will change and develop sometimes differently depending on the diagnostic manual that's used. Politics and lobbying plays a large part in that too. The inclusion of Aspergers is an example of that.

Profound autism is a term that's being used more and more to separate out those with the most needs and there is call for it to be included in the next dsm.

Nobody is writing off those with type 1 autism but as you too have acknowledged the needs are incredibly different. Why shouldn't this group of people have their own dx and allow those with different needs to have theirs?

Whilst the autism dx stands as a mixed bag of presentations I have no issue with describing my son as profound or severly impacted by his autism and yes I would definitely say that while you do have needs, his are vastly more. You being able to post so articulately is evidence of that along with the understanding of yours and your childs needs. I won't minimise his life for the benefit of others.

I have a good visual of how the dsm's have changed over time. I'll try to post it, if I can find it.

I agree. There needs to be much more meaningful and differential diagnoses, but we are all largely stuck with 'just Autism' since the Aspergers diagnosis was abolished. There's often also something additional at play. I'll explain further when I talk about my sister.

I don't think any fighting among ourselves helps, but I can see why it's frustrating all round.

I can see both sides of the coin. I grew up with my sister, who we described to other people as being 'profoundly disabled' as it was the only way to get across how difficult her disability was. Her primary medical diagnosis was Downs syndrome, but we understand now that she also had Autism (among other things) She was non verbal, incontinent, blind, and couldn't walk. Her needs were so severe that she needed 24 hour care in the end. She had a social worker and a Psychiatrist allocated to her, but my needs were largely ignored. It was only when the social worker pointed out that I was going downhill that something was done to help me. I wasn't eating and had become malnourished. I had stopped speaking and engaging with people, I didn't want to go to school, I was bullied, and nobody understood or cared what was going on with me. I hid behind the sofa when visitors called. My sister was largely unaware of anything, such was the degree of her disability, but I suppose I had an 'awareness' that meant I was spiralling into a ball of anxiety, frustration and depression.

All medical diagnoses have a level of severity. Going back to my sisters Downs syndrome diagnosis, I see people with that condition on TV shows now. I see people with Downs syndrome who are able to do paid or voluntary work, I see them walking and talking. It made me very sad for my sisters level of disability. It made me frustrated that nobody understood how much it affected my sister and us as a family. It can make you feel aggrieved and angry. I would never deny another person's Downs syndrome diagnosis however, as that's not helpful to anyone and I think it just further deepens any resentment and anger. However much that may feel justified.

So I'm one of those who coped by masking. It exhausted me. It made me ill. And I only coped until I didn't. My needs were brushed off for most of my life. I've struggled with friendships, I can't have a relationship as I don't understand people's motives and I don't understand other people's language around day to day communication. I have locked myself away at times, I can't gobto social functions and I'm judged for that as people don't understand. I can't explain (or people don't want to know / hear / understand)

My daughter is also Autistic and has situational mutism. We call it that because selective mutism just sounds like she 'decides' when she fancies speaking. She can't go to Autistic groups as she can't cope with other kids. She has no friends. She's self harmed multiple times. Children and adults in this 'category' are more likely to take their own lives.

My struggles are mine, and my daughters are hers. It's so much more complex than just a black and white mild verus severe. I don't deny that having a profoundly disabled child in any way isn't absolutely life changing, frustrating and impossible at times. However, I don't think writing the likes of myself or my daughter off as the 'level 1's' is helpful. I'd love to see as much support for everyone as it's possible to get, as sure as hell we have all probably spent years fighting and it is exhausting.

We all deserve understsnding and empathy. I'd like to take this opportunity to acknoweldge that I hear what you are saying and i hope things improve from a diagnosis and support perspective. You deserve that, and so does your child.

For clarification around why a spectrum is not a line between mild and severe, I think this diagram is helpful and it's how Autism UK describe it. My own North East branch gave out these images and explained on detail how important it is to understand this.

Also, I'd like to put the self diagnosed cohort in a separate category. Self diagnosis of any condition does nobody any favours. I never described myself as being Autistic until I was officially diagnosed. I wouldn't do it with any other health condition either. Although I think it's fine to say 'I might have...' or 'I'm being investigated for...'

It's quite clear what she means and with any definition of 'the spectrum' there will always be people who are able to communicate, work, have family etc be successful and then there will be those who are impacted severly in every way, all day, everyday in every trait you want to include.

@Glassmatt you always get a couple on these threads!

What a compassionate response to a parent who’s trying to express their frustration around how autism is seen and who is sharing her real life challenges!
please explain what a spectrum disorder is, as I’m struggling to understand.

FFS, there's always a couple...the old "two ends of the spectrum" thing never gets old, does it? No matter how many times it's explained that's not what the "spectrum" in "spectrum condition" has ever meant, it's doggedly stuck to.

I was literally about to bring him up, he's a great character.

@x2boys I always have the intention of not engaging but then as the threads progress and I don't see my son or his needs being represented, it feels a bit like his part of autism is being erased. I don't want people who have no experience of autism to only think autism is the other forms. I want him and his behaviours to be understood, seen and considered. Then I get pulled in and I should know better. If you ever see me doing this on a thread know that at home I'm partial kicking myself for getting into it.

There does seem to be more pushback now.

Yes, I'd be happy with being called anything else as long as it represented him.

As an aside because I know we often cross paths on these threads. I've pushed for the LD dx, partially to help with adult services.

Yes it's exhausting I try not to get into discussions about it
Profound autism definitely needs a different clarification of its own even if they call it something entirely different imo.

I'm quite glad I've seen this thread, I often get into arguments on mumsnet threads about splitting the dx and the differences. It's good to see a few others who feel the same.

One of the reasons usually given for not wanting the autism dx to be split is because those with fewer/less needs/hf whatever think that their dx will be diminished or it will be seen as less than if those with the most needs are separated out and they'll get less support. I've found quite often this is also said in conjunction with those with severe/profound/ low etc have the same autism with added comorbid dx's. It feels like some want the benefit of those with more needs to justify their support while trying to deny severe autism exists.

I usually point out the mh needs of those with hf are usually the main need so to speak (I'm shattered and can't think of any less abrupt way to word that) and are then told that is part of their autism but those with severe have ld as an extra which can't be part of autism (almost as though mh needs are acceptable but learning disability is something dirty).

The argument then eventually moves on to that i should value their opinion and that of actual autistics (whether they have dx or not) because they have a better understanding of my son due to a shared dx and their perceived experience. When I point out the arrogance of assuming they have a shared experience with someone who can't even communicate that experience they usually back off a little.

This then goes on wash, rinse and repeat.

My niece has profound autism (that’s what her mother calls it). So not the ‘type’ you are talking about. Non verbal, with learning and physical disabilities. You don’t see that portrayed at all, nor her classmates who often violently act out.
I think the issue is that autism presents itself in so many different ways in real life a character may represent one person but feel alien to another.
The Good Doctor for example, high functioning yet socially awkward, now seems the more common person with autism depicted on tv, alongside Saga Norén from The Bridge. Are these more relatable?
Mind you I have type 1 diabetes and can’t stand the Steel Magnolias portrayal of someone with type 1. My DD does appreciate the depiction by Martin Sheen as Jed Bartlet of a person with MS as she was watching it when she was diagnosed (at age 17). It made her feel that if you could be president with MS she could still have a valuable future.

I completely agree with her!