To be so angry after watching "Love on the Spectrum"

[Jobs4kids]

As the parent of two high functioning young adults. Admittedly I only watched one episode (no wish to watch anymore) but was dismayed to see that all the autistic people featured were infantised and presumably picked for their entertainment value (awwww bless them). I actually watched it after overhearing a colleague say how funny it was.

I feel it's representative of just one type of autistic person - those that come across as frankly odd (for want of a better word), obviously autistic with terrible social skills, and who in many cases can't live independently/attend mainstream education. It's an extremely wide spectrum and many people with ASD, such as my kids, don't come across like that all! My son, while quite quiet, has an excellent job and interacts in public very normally (can be a bit quirky behind closed doors though!) My daughter is away at uni and comes across as very outgoing and socially able with a large circle of friends, including a few who are also high functioning ASD. Many of her newer friends don't know she's autistic (only brings it up if relevant to the conversation) and she says most she's told seem surprised, although one remarked "ah that's why you're so good at chess!". That's not to say being autistic doesn't cause her a lot of difficulty - she's an expert masker, which is why she wasn't diagnosed until nearly 18, and there are times she needs to go into hibernation as her social battery gets depleted as all the acting "normal" is incredibly exhausting. She also constantly worries about how she comes across, replaying interactions in her head and is prone to depression, anxiety and self harming (has started counselling to help manage all this). She can also meltdown in private. While she's not had a serious relationship as yet, she's had a lot of interest (no surprise, she's extremely attractive) and I worry some may be put off upon finding out she's autistic, especially after watching programmes like this!

I think it's a shame they don't also include people like my kids and some of their friends in the programme to demonstrate the vastness of the spectrum or it because they would make very boring TV as you couldn't laugh at them?!

Sorry for the rant but both my husband and myself were so cross after watching this and pray my kids don't see it!

You saying that doesn’t actually make it true though 😉

@CatkinToadflax perhaps mental health support such as counselling or support groups. Autistic people are more likely than nt people to commit suicide.

Some quite severely disabled kids end up going to mainstream school nowadays. My kids primary school has children with learning disabilities and high support needs meaning they need 1-2-1 care (I know from helping out on school trips).

Yes, an amazing reversal. I remember MN from about 15 or so years ago. There were a few regular posters who were parents of children with autism, and the relevant board had a lot of useful discussion between them.

Without exception, these children were significantly impaired young people who would likely need a significant level of support all through their life, and the challenges their parents faced were high.

These days, I read threads every day in which posters gratuitously bring up their 'autism' and cite it as the reason for some perfectly ordinary experience/preference/etc that they have.

But until I read this current thread, I falsely believed that most people still viewed significant disability and lifelong dependence on supportive care as being the core central experience of autism. I thought people understood that the people in Love on the Spectrum (as I understand the programme) are actually among the most high-functioning and independent people with autism. I thought people were very aware that in the severest cases autistic people and their families are living in crisis, dealing with terrible levels of distress, and with very pronounced intellectual disabilities arising from the severity of their autism.

This thread has been a bit of an eye-opener because I begin to understand that, for a lot of younger people, the whole centre of gravity of the concept 'autism' has been pulled to the people who are just on the very fringes of being diagnosable (if that), people for whom (imo) their 'autism' should just be regarded as a 'neurotype' rather than a disorder, not appropriate for medicalisation in and of itself, but only relevant as a possible contributing factor in any mental health challenges that they might (or might not) develop.

And, just to add, it has been quite frustrating to see how taboo it has become on MN to question, even mildly, the increasing diagnoses of autism in the most mildly affected people.
Ironically, anyone who does raise questions has been at risk of being called ableist (and even deleted), even though the real ableism lies in co-opting a disability category in order to build a reassuring self-narrative, and pushing disabled people to the margins of their own diagnostic category.

Completely agree with this. My son is significantly affected to the extent that he couldn’t attend mainstream schools, can’t work and will never live fully independently - but his experience of autism is still a world away from those who are profoundly affected. It’s a completely different situation again for those who attend and do well at mainstream schools and have careers and families.

@MyThreeWords Thank you for your understanding of the shift that is going on, we need as many people as possible to advocate for my children who will never be able to come onto a Mumsnet thread to speak about their experiences.

"But until I read this current thread, I falsely believed that most people still viewed significant disability and lifelong dependence on supportive care as being the core central experience of autism. I thought people understood that the people in Love on the Spectrum (as I understand the programme) are actually among the most high-functioning and independent people with autism. I thought people were very aware that in the severest cases autistic people and their families are living in crisis, dealing with terrible levels of distress, and with very pronounced intellectual disabilities arising from the severity of their autism."

This is really interesting, and perhaps I am younger than you (I am young mum) because until I had my children my only references for autism were very cognitively able portrayals (e.g. would have been given Aspergers diagnosis) that I thought THAT was what autism was (exclusively, I had never met a high needs autistic person until I had my own kids) It must be around the 15-20 years ago mark that the tide turned.

I personally (definitely personal opinion here) am genuinely very pleased lower support needs autistic people are recognised as autistic but I hate the denial of any kind of privilege and pushing out / othering of high needs autistic people. It is really so upsetting and worrying.

As someone with a DS with ASD, I understand feeling relieved it isn’t more severe and that he is highly intelligent. I think that’s kind of natural. He is socially different though, he’s only 5 so I hope he’ll grow up and socialise more. I guess I understand your overall point, you’re worried autism is simplified and stereotyped which it very much can be. People with autism are often also infantilised, that is true and worrying.

I haven’t watched this show but I did used to watch Undateables when that was on and enjoyed it. Not a very nice name though.

To say disabled people whose lives are severely impacted by their disability are priviledged is disgusting .

Anybody with an autism diagnosis is not mildly affected . It needs to have a significant impact on life to reach the diagnosis threshold.

Your ignorance is palpable.

“Without exception, these children were significantly impaired young people who would likely need a significant level of support all through their life, and the challenges their parents faced were high.“

You could be describing my verbal autism children who do not have an additional learning disability.

And yet you have (autism expert) Tony Attwood coming out and saying he finally realises he too is autistic…and explaining that he has the ‘autistic profile’ but not the disability/impairment aspect.

I just cannot understand that. How can you even get a diagnosis without impairment?

You appear to misunderstand privilege (and I say this as the mother of Autistic twins).
My DC, both Autistic (and ADHD), diagnosed young (they are now 8), are able to attend mainstream primary with significant support, can articulate their needs and have no learning disabilities (although both have moderate learning difficulties).
Yes, they are privileged in comparison with individuals who have more severe Autism and/or Learning Disabilities.
It's not disgusting to say that, nor does it diminish their (sometimes significant) struggles.

Are you Autistic, too, as you appear to be taking other people's opinions rather personally.

Maybe we'll come back to the thread in 20 years and compare where our children's lives are at.

Privilege within disability is a well known phenomenon, it's why we have (just as one example) intersectionality.

I also wasn't saying people who have been "severely impacted" by their disability are privileged, I said that there are those who are less impacted by their disabilities (demonstrably like OP's children) who have a layer of privilege.

I have been very careful in many of my posts to point out that I do not include autistic people with average or higher intelligence who also have serious mental health issues. An actively suicidal autistic person in a Tier 4 mental health bed with 24 hour 2:1 supervision quite obviously is not "high functioning" or "mild".

I don't think I am the disgusting one here. You practically spat that at me while quoting my post which said I have credible worries my children could be sexually assaulted and never be able to tell anyone to get it to stop.

People with high functioning/low support needs autism are obviously more privileged than severely autistic people, or people with other severe disabilities. I don't know why that's controversial, or why so many people these days seem to find it offensive to be asked to consider that others are more disadvantaged than they are.

There is no high functioning autism. To have a diagnosis it has to severely impact life.

Nobody with a disability is privileged, they’re inherently disadvantaged.

‘Clinically significant impairment’ is the term used in the DSM rather than ‘severe impact’. Everyone who has a diagnosis should, by definition, experience the negative impact of the condition but it’s obvious that severity does vary.

And, as I said upthread, when an autism expert says his own autism comes without any disability then that is very confusing!

There clearly is. Like my daughters, I'm Autistic and whilst I have, at times, moderate support needs, it would be disingenuous for me to say that I'm not high functioning.

Significant impairment places a high starting point that is not “ high functioning”

Are you being purposefully obtuse, as you are just not getting what people are saying to you?!

This. With bells on. There's only one judgemental person here and it's you, op.

You can say what you like about you but the fact a significant impact on life does not mean high functioning so do not dare to tell me that my children or others like them are “high functioning”

I don’t dispute that the terminology is troublesome and can offend some (though not others), but there are certainly levels of severity. And also an autistic person might sometimes find themselves needing more or less support at different life stages.

What do you think of Tony Attwood’s position that he has the ‘autistic profile’ but not the disability? It confuses me tbh. He says he was less affected as a child btw.