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?

[JoanBartlett]

Good points on the thread above.
I did watch the Chris Packham programme tonight and found it interesting www.bbc.co.uk/iplayer/episode/b09b1zbb/chris-packham-aspergers-and-me.

[KickAssAngel]

and needs can change across time as well. DD is HF, but has had crippling anxiety which totally exacerbated all her symptoms. It's been impossible to work out what was ADHD/ASD/Anxiety. She barely slept, had a very limited diet and at one point was refusing to speak to teachers at school and was growling/barking at them instead.

We've put every kind of support in place that we can to help her, and she's moved to high school (which a year ago we were all dreading hugely). Over the last 6 months she's transformed. She still very definitely has strong ASD tendencies, and the ADHD lack of ability to sit still can be quite annoying (understatement) but she's learning to be sociable and is coping at school with the organization to a level that nobody ever predicted for her. I'm fully enjoying this new development, but aware that it could all go tits up at any moment if the anxiety kicks back in again.

Mine & DH's family are all convinced that somehow she's 'cured'. They always thought that me being stricter would fix her. They're expecting to be able to hug her at Christmas, which won't happen, and smugly tell me that I should have just been firmer all along!

[SharkiraSharkira]

Exactly Statistically.

[StatisticallyChallenged]

It feels a bit like we need some new/different language around autistic conditions to make it easier to define and explain the needs that people have; the one big box label doesn't seem to be working particularly well for any particular subset at the moment and it means that targeted support services are very hard to find too.

[toffee1000]

That makes sense Sharkira.

I can see why they've now called it Autism Spectrum Disorder, as "spectrum" obv implies a whole range of symptoms/degrees of being affected. As a society we like to pigeon-hole things which is an impossible task with ASD. Then again, "ASD" doesn't give any real idea of how your child will be affected long-term, so in that sense it's not helpful.

[whosahappyharry]

I feel like the children in the middle are so often forgotten too, the children that not even professionals understand so they're labelled as "complex". My teenage brother has an IQ of 106 but his processing and emotional understanding is down in the 40s. The ones with co-morbid crippling mental health conditions. The ones who are school refusers, will probably never hold down a job or live independently but aren't "disabled enough" for respite or supported living or accessing charitable services.

[StatisticallyChallenged]

They must be utterly worn out AutumnSkies. But that's the danger isn't it, insisting that autism is just a difference and so there's no need for treatment, or to develop screening tests or therapies leaves those who do need and want help utterly shafted.

[SharkiraSharkira]

Well in my son's case I think it is definitely a symptom of the autism in that, his toiletting difficulties are because he doesn't understand the sensation of his bladder/bowel being full and needing to empty. He also cannot predict how long he can hold it for in order to reliably get to the toilet on time.

Probably a combination of being under stimulated (sensory), so not physically feeling the sensation very strongly and also not knowing what it means when he does feel it.

As such it is incredibly difficult to potty train him because how do you begin to explain to someone what the sensation of needing to wee feels like?

Also tbh I think there is a tiny element of laziness - he knows he doesn't have to learn because someone else will always clean him, as he can't do it himself.

Obviously it's probably different from person to person and symptom to symptom. It's very hard to explain or investigate!

[Autumnskiesarelovely]

We are on the same page statistics

I could cry when friends tell me how their families are, it’s like they are embarrassed, ashamed, utterly on the edge of coping. A friend has her son bang his head so much he’s causing real damage, they are broken, the doctors are prescribing medication, but it has side effects, but it’s that or risk brain damage, they can’t get him to wear a helmet, her arms are black and blue from protecting his head from the wall, covered in bites. They’ve had to phone the police at times. He hasn’t slept for days on end sometimes. Help is poor quality or non existent. His sister is sidelined out of necessity. She can’t relate to anyone at school as other kids think autism means he must be intelligent. She has nothing to relate her situation to. They completely love him, but I worry about them all a lot. They feel that they to be positive at all times. I think if there was a cure they’d snap it up.

[x2boys]

Ourvye ds2 had a phase of screaming , he goes through phases screaming ,ripping tiny bits of paper his current one is the kitchen sink hes fascinated by the kitchen sink and cold water

[toffee1000]

Like I've said, it's tough. It's not like many conditions where those affected usually display the same symptoms to a similar degree. It affects everyone differently. You get the ones who manage to be successful (by societal standards at least) through to ones who are doubly incontinent, non-verbal etc.
Something I want to ask: are the things like double incontinence caused directly by ASD or is it caused by something that's co-morbid? I've read about "syndromes" etc where autism is listed as a symptom (bizarre when it's already a condition in itself) but there are other things too.
ASD just sounds so blooming complex it's going to be impossible to investigate fully.

[SharkiraSharkira]

Very true cats.

My dsis' ex was partially deaf and had hearing aids but other than that you couldn't tell at all.

[GallicosCats]

Don't want to derail, but this reminds me of the deaf and hearing impaired. They have huge differences in needs according to whether they have profound deafness or a moderate impairment, whether or not they sign and the quality of their education. I am hearing impaired and my issues are quite different from those of a profoundly deaf sign language speaker.

[SharkiraSharkira]

Hit the nail on the head with that last paragraph Statistically!

[Ouryve]

Ds2's special skill is making everyone on the bus jump with a loud scream.

[SharkiraSharkira]

Ds does have a wonderful ability to just randomly burst out laughing for no reason. Not even just a little giggle but a full on proper belly laugh! It always cheers me up too, it's so cute

[StatisticallyChallenged]

I'm not disagreeing in the slightest that some people are much more high needs Autumnskies - and I really dislike the way that there is a sort of forced positivity about autism going on at the moment where you're meant to embrace difference rather than address difficulty.

I say this as someone who is autistic/aspie, so on the high functioning end of the spectrum for want of a better phrasing. I work, earn well etc - things which I am well aware are utterly impossible for many people with autism. But even for someone like me this attitude of "you don't need to adapt, everyone should embrace your differences" doesn't work and isn't realistic - for those with more severe difficulties (for want of better phrasing, I think many have acknowledged how hard the language makes it to differentiate) then it's irritatingly nonsensical.

Pretending people with autism are just "different" and don't have difficulties is the wrong approach IMO, and minimises the experience of many.

[x2boys]

Ah yes special skills

[SharkiraSharkira]

Yes that happens with every ASD diagnosis, ds' special talent was allocated to him at the appointment with the paediatrician *sarcastic emoticon

[Ketoattempt]

Just the other day I saw somewhere a Post by a mum who was upset her child had been diagnosed with ASD, I was amazed to see replied which included ‘you will soon start to find your child has a special skill, it might be maths or music’, like autism comes with a guaranteed ‘special skill’ or party trick

[Ketoattempt]

My friend who has high functioning autism is so anti any autism treatment/therapy and believes people should be left to just be themselves. I completely see where he is coming from and do think sometimes as a society we can try to shoe horn people into becoming what we deem ‘normal’ but he doesn’t get the difference communication abilities would make to someone with severe autism. It must be so frustrating when you can’t express yourself except through things like head banging. I know someone who spent weeks doing more head banging, screaming and hurting herself. Turns out her shoe was hurting her toe but she had no way of expressing it.

I feel with the media and people in general, they once thought of the word autism and they would think of really severely autistic people, now they think of high functioning people who just struggle with social skills and it seems very popular for tv shows. I saw the advert for the show you mentioned, plus a new film on Netflix about dating with autism, Sheldon on Big Bang (although the writers say he wasn’t written with autism in mind)

[Autumnskiesarelovely]

Point taken statistically. I would be prepared to stick my neck out and say that some people have a much more limited life - as in unable to communicate or eat or sleep and need constant care. I’d say that is high needs.

I get that it’s a spiky diagnosis, as in, a child could have speech, independence but very high anxiety. Everyone’s needs and voices should be heard. I would totally support better services for anxiety.

However I do think that it’s very hard for many families who are dealing with 24/7 care, sleep disruption, no speech - constant constant vigilance. I do believe they are the forgotten and neglected people. And sometimes they are trodden upon by ASD advocates who are well meaning but suppress talk of severity, problems, difficulties.

[KickAssAngel]

A really well thought out documentary can show disability very well. I saw some film of Steven Hawking where the director spent days getting to know him, talking to his nurse, just waiting for him to respond to prompts etc. The film used a lot of close-up as Hawking has 'normal' eyes, nose, mouth etc, and close ups of him look able-bodied. The final film had some shots of him sitting in his chair, but the general impression was more of someone who is able bodied than not. Apparently Hawking was really please with the product as it didn't focus on the chair so much.

So - a director who bothers to know the person as a person, and tries to show that in the footage, can create a different impression if they want to.

[StatisticallyChallenged]

The more I think about this, the more I think that doing away with the Asperger's diagnosis is a mistake. I know that autism is a spectrum anyway but it feels like refusing the recognise - diagnostically - the differences really isn't helpful.

I’m so sorry it must be really tough. I do think with scarce resources and limited media, for me it is your families experience that I would want to see as a priority, and help for you that I’d want to support first. We should help those most on need first

I think that's a tricky one to balance; those with more severe needs obviously need more help overall, but at the same time there are people who are less severely impacted by their autism where a relatively small amount of help can make the difference between integration with mainstream society vs a life with no employment, living on benefits and so on. The support needs are so very different though.

[Autumnskiesarelovely]

So much of the 'pro disability' stuff in the media and information about disability is about overcoming relatively mild problems which is fab but my experience of having a disabled child is so different to that. He will never be a Paralympian. He will not overcome his disabilities. He will never speak, won't walk, won't feed himself independently or go to the toilet and it's very hard work looking after him. I love him very much and we have a happy family but the reality is very hard physically and mentally for us as his parents and will last forever.

I’m so sorry it must be really tough. I do think with scarce resources and limited media, for me it is your families experience that I would want to see as a priority, and help for you that I’d want to support first. We should help those most on need first.