To wish that, just for once, there would be a programme made about low functioning autistic people?

[SharkiraSharkira]

I admit this is a sensitive subject for me as I have a 'low functioning' autistic child but....

I think it's great that ASD is becoming more well known and more understood, so to speak. People know more about it, are willing to talk about it. They are happier to portray it in TV and movies. This is all good as it gives the condition more exposure.

However. It always seems to be the same kind of autism portrayed. The high functioning ones. The ones who are savants or gifted at something. The ones who can have relationships, jobs, and live independently. This was all triggered by an advert for a new drama I saw who's main character is a brilliant doctor/surgeon who happens to be autistic.

But I can't recall ever seeing a programme or film (admittedly I haven't seen them all) that shows the other side of autism. The ones who headbang or are incontinent. The ones who cannot live independently or have a job, ever.

I'm not saying that programmes about higher functioning ASD are bad, just that it would be nice to see on screen a situation/person that relates to ASD that is vaguely familiar. So many of them, as a parent of someone who is severely affected, just don't resemble my experience at all. They may as well be different conditions entirely.

Aibu to wish that for once producers/filmmakers etc would show the other side of autism?

Following this thread closely. No DC with Autism, but worked loosely in the support field for a number of years in the past. Hats off to all you who have coped with your very individual challenges 24/7 and it's been heartwarming to see you listing the things you love about your DC.

www.theguardian.com/lifeandstyle/2010/jan/23/autism-horse-boy-rupert-isaacson

Did any of you read or see the Horse Boy documentary? If you remove all the controversy around seeking a 'cure' and all the Shamanic stuff, it seemed to show the challenging realities of living with an Autistic son quite accurately? I always wondered what parents of autistic DC thought about it.

Apologies if this has already been discussed or was totally discounted at the time. I've been a bit out of the loop. Thanks for starting this OP.

I’m disabled too, Andrew.
Physically disabled, deaf and my autism also disables me significantly. Would I want to lose some of the things I know I have just because of my neurotype? No.

I’d far rather anyone meeting or working with your nephew approached him with an open mind knowing he’s autistic but wanting to know how best to meet his individual needs based on what works for him rather than “this is x, he’s ‘low functioning’ so that means we have to do x, y and z” because that’s what is done for someone with that label, even if it’s completely wrong for him.

Does that make sense?

I have yet to work out what different abilities my son has - I only see things he cannot do that others can.

It makes sense to me Bishop.

It does.
I think my point is that while I understand the "different not disabled" type thing is very useful to some people, I think it is aimed at the higher functioning end of the spectrum and is less useful for those on the other end.
We are all individuals and should always have our needs met on an individual level, but unfortunately some of those needs are extreme and are not just a difference in normal, as it were.

Well my son has an amazing ability to take all his clothes off in two seconds flat where ever we might be whinberry

My son has HFA and was diagnosed within the last 12 months after he had an almost complete breakdown and tried to kill himself.

I remember , when he was being diagnosed, saying to the mental health professional 'well it's mild though isn't it' referring to the fact that my son is verbal (albeit not able to express as well as NTs) . The mental Health professional said to me well it depends on how you define mild. Your child tried to kill himself, not mild really is it?

That's stuck with me, yet now my son has recovered from that initial breakdown and has strategies in place to cope in mainstream high school and we've had friends who've queried the diagnosis - 'he can't be autistic he's too ..... normal/ sociable/ can make eye contact', our DS does have difficulties and we see his autism at home much more than he let's on in public due to masking. Our DS will probably be ok and will hopefully be one of the 14% but his autism is serious in the impact on his life and if I could have taken away those difficulties that made him not want to live at the AGE OF TEN, I would have done so with a heartbeat.

Andrew yes we are disabled, all of us, and I believe the labels minimise that for some. It also doesn’t do those with greater challenges any good because it causes those interacting with them to follow a prescribed route that may not be appropriate for that individual.

I think the only assumption that can be made about autism is there is a communication issue. How that then manifests from there is completely different in every single autistic person. There are four different presentations in the four diagnosed people in my house (and a fifth presentation as yet undiagnosed).

andrew yes I agree and I think your voice is rarely heard or suppressed.

I think it’s fine to compare with cancer funding - I really don’t understand why anyone with a child with cancer wouldn’t also want to help funding with disabilities too? It’s not an either / or. Of course I want funding for cancer, however I also want more for ASD and it’s useful to highlight how extreme the difference is.

We all have kids who suffer, often severely, both kids have limited lives and ASD life expectancy is much shorter. Sadly.

I would cure my sons speech and fustrations in a heartbeat. I love him and value him totally.

x2 my middle one does that too!

Bishop

Dsm-5 (most up to date diagnostic manual) doesn't do HFA but does have three levels of severity based on levels of support required.

whinberry that might be the case but in our area a blanket ASD diagnosis is given.

The HFA label has been applied to my son by school on the basis that he is not low functioning.

Does anyone watch "Fathering Autism" on YouTube?? Really interesting insight into a family with a LF autistic daughter. They seem lovely and are really honest about things. I know some people hate the family vlogger type people but it's one I really enjoy.

My ds had a very early diagnosis which I realise I am quite fortunate to have as some people have to really battle for years to get one.

I remember the day that they told me the diagnosis, I walked away from the paediatrician's office feeling completely confused because Ds did have eye contact and did like physical contact (hugs) and in some ways was just completely opposite from what I had grown to believe autistic people are like. All I had was a leaflet explaining what ASD was (ie, a neurological condition) and that's it. The leaflet could give me no indication of how his autism might affect him or what he might grow up to do, the challenges he might face, etc. I would say that 80% of the behaviours he has, or had, were things I had absolutely no idea could happen in an individual with autism. I had to learn as it happened. And even when it was happening, there was virtually no information about HOW to actually cope with these behaviours or what to do about them, largely because I did not know anyone else experiencing the same issues to ask. The professionals certainly didn't seem to know because all of their experience seemed to be with more hf individuals that had a whole different set of issues (different but not less if you see what I mean).

I feel that, however daunting and maybe a little depressing the reality of my son's condition may have been, it would have been 1000x more helpful for me and my family if we had had more information about the more severe side of things early on. It may have frightened the life out of me, but at least I would have been vaguely prepared!

taratill yes it is a blanket ASD (no more Asperger's or PDD NOS) but there are severity levels - I guess not used as much. School have no place adding HFA.

'I think it’s fine to compare with cancer funding - I really don’t understand why anyone with a child with cancer wouldn’t also want to help funding with disabilities too? It’s not an either / or. Of course I want funding for cancer, however I also want more for ASD and it’s useful to highlight how extreme the difference is. '

Do you even know how low funding for paediatric cancer is? I'll give you a hint, it's closer to zero than 10%. Of course it's not either/or but it is a completely different kettle of fish in that it has to be treated asap or the person dies and in some cases, it can be cured. It's not a lifelong condition for many (although the treatment can cause lifelong impairments) but it has a surefire fatality rate if not treated. It is usually acute and requires prompt and intensive treatment in hospital.
It's in no way useful to compare the two, it's insulting and upsetting as hell to people whose children have died from that disease. 'Well, at least you get more funding,' means FA to people who have watched their child die by inches, often in immeasurable pain that cannot be fully assuaged, often after years of debilitating treatment (limb amputations, months in isolation, treatments that cause untold side effects and damage to their young bodies). They are two very separate conditions. Paediatric cancer is not a spectrum, it's an acute illness that kills quickly if not treated.

whinberry agreed, although I don't think it harms anything really.

I found the Chris Packham thing interesting last night, lots of similarities in my son's presentation actually. Especially his ability to mask on camera/ intense special interests.

expat I completely agree with you

I agree. I watched the first episode of the show you’re referring to Op, and it oissed me off. So many stereotypes.

My 12 year old DS has autism, he is somewhere in the middle. He goes to MS school, yet had full time 1:1 as can’t function without it. He isn’t suitable for SS as he is sociable (yes people with autism can socialise). He can feed himself, go to the toilet, hold a conversation as long as it’s something he likes (currently Christmas) yet can’t wash his hair, face or brush his teeth himself. He’s an absolute ray of sunshine, he isn’t violent except to himself. Yet people hear autism, then MS school and assume that he is HFA. He most certainly isn’t. Every day is a challenge for him.

The show you’re trailing about in the OP is The Good Doctor, it’s really hard to watch because whilst the story line is good and the characters are great, it highlights the difficulties Shaun has because of his Autism both whilst working and in relationships but also at home and in the past, it covers how he has managed puberty/bullying/loss etc and the way people react to him, I don’t think it’s the ‘usual’ portrayal of Autism at all its very well done.

Whin, I completely agree.

My Ds may be 'differently abled' but to me all that means is that he could potentially be incontinent, headbanging, etc as a fully grown 6ft+ adult, to the point where I won't physically be able to managed his needs and care for him adequately anymore and will be forced to put him into a residential home. It means that he will probably never be able to have a actual conversation that doesn't consist of parroted phrases from disney films, let alone a job. It means he will probably never have a relationship, have sex, fall in love, get married. He will probably never be able to tell anyone when he is hungry, tired or in pain.

If I could take away all that for him and give him a NT life, I would, in a heartbeat.

I appriciate that not everyone would make the same choice. We are all different. Neither opinion is wrong to me.

For me the problem lies with lobbying groups - and the media who do tend to push

• ASD is a difference, not a problem
• as above suppressing discussion about challenging behaviour and families in distress
• services should be mainstream and light, as in, not challenging to the person but about adjustment and rarely talk about evidence based intervention
• any parent looking for a cure is anti ASD
• people with ASD are intelligent geek type stereotype.

The above does tend to make more sense for someone with hfa who maybe wants mental health services for any depression or anxiety but who can communicate, work and live independently.

If anything this should open our eyes that what works for some, does not for all. The more specific the lobbying or media the better.

I can’t remember seeing anything on families struggling with harm in the home. I haven’t seen anything on what speech and language interventions work. I haven’t seen anything where they follow a child’s journey through life who will never be independent.

Shakira, I think that is one of the sadest things about having ASD in this country, is that there is so little professional support and help.

I was told my son had autism & said, "ok, so now what?" and the consultant looked slightly stumped and said that I'd be put in touch with the CAMHS team and they'd take it from there. Well CAMHS had nothing to offer, neither did the school & nor did anyone else as far as I could tell.

I read every book I could get my hands on, researched online & started looking for schools that might be able to help, as the best the local school could do, was offer him an egg timer (I joke not) and the hallway for time out.

I work full-time to keep the roof over our head and found that all the support groups were day time only. Perhaps if I hadn't been a single parent, I would have started an evening one myself, but I didn't have the time, the money for babysitters, or the mental bandwidth.

I support various ASD charities, but sometimes I want to scream, its not more bloody research that's needed but support on the ground.

Tits, I haven't ruled out watching it, as much as the initial premise annoyed me you can't get a whole picture of the show from one advert. Glad to hear it's been sensitively handled.