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!

What I actually said was:

It also doesn’t mean that they are less disadvantaged than someone more severely disabled, given that the disadvantage that comes with disability mainly arises from the barriers society imposes.

If you’re going to quote me, at least have the decency to do it in full, and in context, rather than to suit your narrative.

The social model says that impairment + barriers = disability

You're using disability synonymously with impairment which is not correct. And you're using disadvantage to mean disability.

You're saying a less disabled person faces no more disadvantage because the barriers are the same.

A) It's not true the barriers are the same.
B) It doesn't matter that I didn't quote the whole lot, because you're still saying less severely disabled doesn't mean less disadvantage.
C) The impairment is greater in more severely disabled people, so even if the barriers were the same level as they are for less disabled people the level of disability (i.e. the disadvantage) for more severely disabled people is greater.

Well you can keep repeating yourself, it doesnt mean you're right, I dont agree with you. You also dont speak for everyone else so you can stop splaining all over the place. Speak for yourself.

But you can be patronising and rude to others who don’t agree with you.

What she is saying is correct.

The ones being marginalised are the ones having their disability dismissed by others. Those being described as privileged whilst being unable to advocate for themselves whilst being at hugely higher risk of prison, abuse, bullying, suicide …..and having next to no support for a disability that has a significant impact on life.

Says the rudest person on this thread...

Is ‘less impacted’ perhaps a better term to use than ‘privilege’ when it comes to disability? It acknowledges the differences in support needs etc without dismissing the difficulties faced by all disabled people.

Nobody can decide if somebody else is less impacted or disabled.

Nonsense. By that logic no one could ever assess anyone’s needs. Of course some people are more affected than others-that’s why care, support and adjustments aren’t one size fits all.

But you don’t know the care needs of others or how they’re affected.

Eh? Are you some weird AI bot that has malfunctioned?

I appreciate what you're saying, but clearly that doesn't even satisfy the people who deny there is any advantage in being less disabled and also we already have really solid words to describe the effect (e.g. 'privilege') that are rooted in civil rights histories.

Privilege really is not "you have it easy". My very severely disabled children have their own privileges. Perhaps people should do some reading on colourism and even (although this may challenge and upset people, so discretion advised), passing privilege related to disability. We don't have to agree with all of it, but denying all privilege is ableist in itself.

I'd also say, change this language for whom? Because once again, I don't think it is the most marginalised who will benefit.

DS1 was born exceptionally prematurely, on the cusp of viability. He was so early that we didn’t have any statistics in terms of what his future could look like, if he survived, which was unlikely. We were given a long list of disabilities and impairments that he was likely to have, including severe brain damage, being blind, deaf, never walking, never talking….. the list went on and on.

He is very significantly autistic and has multiple other disabilities as well. However he can see, he can hear, he walks and he’s wonderfully verbal, albeit completely lacking any filter. He didn’t have a mainstream education. He doesn’t have - and never will have - a mainstream life. But he could have been affected so much more severely than he is. And I am very, very grateful for that. It’s all relative.

the disadvantage that comes with disability mainly arises from the barriers society imposes.

I think the social model can only ever be partly true. It’s not hugely relevant to DS’s disability in any case. It’s not society that excludes in his case, that’s really not the main issue for him.

I also think ‘privilege’ was the completely wrong word to use in this discussion. Not sure what the right one was, but that certainly wasn’t it.

🙄🙄🙄🙄🙄

They did in the beginning, but the fact that that changed made it clearer that the people behind the show are prioritizing entertainment value much higher than educating/raising awareness in my opinion.

Autism is a spectrum, so every autistic person has a different presentation, manifestation, support needs and strengths. Different co-occurring conditions also affect this as well.

"Odd" is subjective. I'm autistic and I find a lot of things neurotypical people do odd, like not saying what they actually mean most of the time and using odd phrases like "it's raining cats and dogs". Like no, it's raining water. Obviously I know as an adult what it means, but still find things like that odd! But your version of what is "odd" is, well, a lot of the things I do, think and say when not masking. Knowing people like you will judge you as "odd" for being in any way visibly or detectably autistic is why most of us who have the capacity to mask or "pass" for neurotypical do. So, thanks for reminding us autistics it's still not safe out there to be ourselves.

OP shouldn't be using the term "high functioning" anyway as it's offensive and divisive. The subtext of that is always "but my autistic kids are the good autistics that are probably going to be high earning highly intelligent adults and aren't going to drain state resources". It reeks of internalised ableism and is frankly gross.

"Love on the Spectrum" struck me as rather exploitative and voyeuristic. Over my dead body would I let my autistic young adult child participate in something like that, and I wonder at any parent who would want that for their child. But then I'm guessing OP wants representation of her children's particular type of autism on the show, but wants other parents to volunteer their kids for it. As is usually the case.

Also, fuck Uta Frith and the divisiveness people seem to want to stir up between different groups of autistic people and families/carers to detract from the systemic issues and funding gaps that cause injustices for all children and adults living with disabilities, neurodivergence, chronic health issues and mental health needs, or all of the above.

Exactly this, needs assessments and care assessments, which I complete, look at those things, its a nonsense to suggest that everyone is experiencing the same level of disadvantage or disability or has the same level of need just by virtue of being disabled or having x or y condition.

I'm very torn on the use of levels, because I think a large number of autistic people fall between levels on different aspects, especially when you consider fluctuating ability depending on environment. But having said that, I think they can serve as a useful shorthand in some situations.

I think you’ve read rather a lot into my comment that simply wasn’t there. I wasn’t attacking autistic people or calling anyone ‘odd’. My point was the autism involves differences in social communication and behaviour which can be noticeable to others.

Presentations may vary but assigning motives to me that I didn’t actually express is unfair.

The people on this show are all media savvy with huge social media followings possibly created by their families. They have all benefitted financially from the fame the show has given them through endorsements, public appearances and sponsorship. They have also benefitted personally by helping them deal with some of their anxieties. Yes, it is a bit of a circus, but they have bought into this.

Perhaps not 'decide', but they can believe and have an opinion on the matter.
My DC were diagnosed young - at Level 2, although a lot of UK service providers don't use levels.
Both are in mainstream with significant support (1-2-1 etc) and both have learning difficulties. One self hurts and has done so since she was 5 (including skin cutting).
Both have significant struggles, but are verbal and are able to articulate their needs.
Getting support in place for them has been a long, awful journey, only achieved by turning myself into someone I no longer recognise.
However, my DC are invited as position of privilege in being able to articulate their needs and having a parent sufficiently able to advocate on their behalf. Many do not have this.
You may not believe in different levels/severity, but my lived experience is that there absolutely are and I, personally, find it arrogant to suggest otherwise.

Perhaps there is a gap here between your intention and how it's expressed in the comment. I accept that this happens and intention may be misread or isn't evident.

Having read back over what you initially posted, saying that autistic people would be likely to come across as "odd" - not something like their traits or communication differences might be noticeable to others, as you've stated in your response, does come across as ableist. And the mention of Uta Frith and the implicit questioning of whether the OP's children are in fact really autistic/autistic enough to count also came across as - yep, also ableist.

I've had the veracity of my diagnosis questioned since that Uta Frith shite, and it's really not been at all pleasant to have people who barely know you and have zero expertise now feel empowered to tell you you're not really autistic, you probably just have a personality problem. So yeah - have a deep mistrust of the intentions of anyone who brings her up in this context for that reason. Her recent spate of opinions have resulted in harm to the autistic community.

Conner James maddies boyfriend James girlfriend are very intelligent imo. No obvious learning difficulties however that may have not bean the case as youngsters However they clearly have struggles with anxiety and social rules

I’ve loved following them.

tanner Emma etc will Need more lifetime support as they are clearly autistic however they seem pretty happy and well
supported and I’ve enjoyed the journey they have shown us on screen too

Stupid post, you watched one episode! Good for you that your kids are so much better than those on the program but as you only watched one episode you won’t have seen the higher functioning people featured will you!! Doh!! God I’m so angry at this ridiculous dopey smug post