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!

But that’s probably much more realistic.
As someone who is married with one of those ‘high functioning ASD people’.

And believe me, problems and difficulties are right there too. Even if they are high functioning.

Anyone can choose an appointee

One day perhaps there will be more programmes and represntations of people with other types of disability too

I haven’t seen the program itself but from the posts themselves the issue here is

• it’s massively ableist.

All done fir entertainment purposes, ie naking people laugh, around tge difficulties that some autistic people have

• It plays on stereotypes.

So autistic people are seen as <insert behaviour from that program, RainMan etc…> and just as. The ‘high functioning’ people don’t exist. Or rather they are see as ‘less affected’ (a term used by some posters here) when actually they are still badly disabled. eg my dh is autistic. He works, married, chikdren. High functioning with few problems? WRONG. He has massive issues around executive function, gets overwhelmed easily, has communication issues, which might be ok in a work setting but usnt in a LT relationship etc etc

It’s not helpful. At all.

Humans, with or without a disability, with or without a diagnosed condition or not, generally have some quirks and traits that can be amusing or difficult or sad or profound. All of us. Its the human condition

There are a plethora of programmes playing on and examining and observing the human condition, for emotions, for laughs, for outrage, for learning. Why would any one group not be included in that.

Sorry but no. He is not “badly disabled” if he is married with children and has a job.

Utterly ridiculous and hugely offensive to people who are ACTUALLY disabled

You do realise having autism is a lot more than this, right? Sensory difficulties, anxiety around crowded places, food issues with taste / texture / smells, sensory needs relating to clothes, washing etc - some or all of these or more can be signs of autism. It isn’t always about how someone fits in socially etc - autism is much more than that.

This!

Did you know that around 30-40% of Autistic people have learning disabilities, but only around 6% of peer reviewed research articles between 2012 and 2020 included participants with intellectual disabilities! So many studies only include people who can self report, fill in a questionnaire or respond to interview questions. That automatically slants the research, and it's vastly more extreme regarding the adult population than children.

I recommend watching "I am not okay" on BBC iPlayer for some insight into another type of Autistic life.

And no, it's not "just" their learning disabilities (so many people want to dismiss the Autistic people who's traits are ALL dialed up to 11, almost all the time and say "that's not autism, it's intellectual disabilities" but this is ignorance - spend a month with any group of people with intellectual disabilities and without Autism, and then spend a month working in an intensive support setting for Autistic people with high support needs, or full time with a family who have a non- or minimally speaking older child, teen or adult child with diagnosed Autism and intellectual disabilities. Often the individual surprises you by having some unexpected cognitive abilities that bring their IQ test score into question, but simultaneously the sensory overwhelm which often includes being unable to interpret their own body's internal signals and being overwhelmed by things like digestive distress, the terror and upset at the slightest change to routine, the difference in processing speed and often fragmented nature of sensory processing, the communication issues, theinability and utter irrelevance of the concept of masking...

There's more than one group of Autistic people not featured on Love On The Spectrum, and it's not the people like the OP's children who society prefers to pretend don't exist or aren't autistic, and doesn't want to accept as they are (if they're talked about at all they're fictionalised and airbrushed through books written using discredited facilitated communication claiming to show they're just neurotypical people trapped in a shell - about the most ableist reimagining going.

edited to delete a stray sentence fragment.

@Canttalkinreallife I am disabled myself so believe me when I say I know what disability means.

Being physically disabled usnt the only way you can be disabled.
Disability doesn’t have to be visible to be a disability.

Let’s take the OP’s dd.
From the outside, no issue at all right? She isn’t disabled in your book. She goes to Uni, is independent etc…
Except, she collapses at home. She has meltdowns. She has high anxiety and is suicidal BECAUSE OF her disability/autism. Because that disability is pushing her over the edge. Isn’t that being disabled? Or would you rather she stops masking, stops Uni instead just to prove her disability?

Time to move on from disability = wheelchair. It’s exhausting

'I see children in my community get a diagnosis where I think they are just what we used to call a bit quirky. They have no problem being social - autism is primarily a 'social and communication disorder' - if you have no issue being social or communicating, you aren't autistic.'

So how do you measure and quantify a 'Social communication disorder'? Bearing in mind the DMS-5 is still heavily weighted towards the male presentation of autism. Myself, son and husband all had what you would call a social spark as children. The desire to play or be with others doesn't mean that an autistic individual doesn't struggle hugely to interpret social cues.

Social convention lead girls in particular to learn to copy then mirror and finally successfully mask. There is a cumulative effect for a lot of those children who appear, quirky which will show up as problems later in life.

@StarlingTheConqueror I also haven't seen the show, so cannot comment on whether it is ableist or exploitative (although many shows are).

However, on your other point...
"The ‘high functioning’ people don’t exist. Or rather they are see as ‘less affected’ (a term used by some posters here) when actually they are still badly disabled. eg my dh is autistic. He works, married, chikdren. High functioning with few problems? WRONG. He has massive issues around executive function, gets overwhelmed easily, has communication issues, which might be ok in a work setting but usnt in a LT relationship etc etc"

• "High functioning" autism is not treated like it doesn't exist. It may be portrayed stereotypically but there is more representation of this need profile than severely disabled autistic people. There is extensive public awareness that "high functioning" autism exists. I'd go as far as to say more people are aware of this group than severely disabled autistic people like my children.
• "Less affected" - can your DH talk? Can he use the toilet? Does he runs at cars? Does he smear faeces? Can he prepare himself a snack? Does he routinely smash his head on the floor? Does he take his clothes off in public? Some people are more severely disabled and I wish a certain group of people would stop denying that is the case, it's very offensive.

We know people like your DH have support needs, but don't gaslight the more vulnerable part of the autistic community.

Will add: supposedly "high functioning" autistic people with co-occuring mental health issues can have very high support needs e.g. serious self harm or inability to leave the house. This is why I don't usually use the term "high functioning" and I try never to deny this group has needs. But if you're married with a job that you can hold on to, can leave the house and properly look after your children, you almost certainly do not fall into this group.

No, my son who is non verbal, developmentally delayed , with communication and learning disorders is disabled.

Your husband who has a job, got married and has children and presumably lives independently is NOT “badly disabled” as you put in your post.

The fact people are so keen to opt into a “disability” is so very telling to me.

You said this so much more eloquently than I did.

People like that poster have absolutely no idea do they.

Omg thank you! I have never heard anyone else talking about the shunting of severely disabled autistic people into LD, and the fact that sometimes it isn't actually LD.

Are you a professional in this area? I was also looking at this topic generally a few weeks back and was surprised to find that even some of the children Kanner worked with had high IQ despite very "classical autism" presentations.

I recommend watching "I am not okay" on BBC iPlayer for some insight into another type of Autistic life.

I certainly second this recommendation, @HaveYouFedTheFish . In fact, I had recently watched that on iplayer when I attended the conference I mentioned, which featured research focussing on, as you say "people who can self report, fill in a questionnaire or respond to interview questions". I'm an outsider to health research (I was there as a new 'public participant' in research), and had been hoping to hear of developments helpful to the intensely distressed individuals and families featured in the programme. I felt stomach-churningly angry at what turned out to be a kind of luxury research.

No, they don't. It's the same on every thread.

@Neuronimo I made my comments about 'quirkiness' being diagnosed (possibly wrongly) as the parent - myself! of an autistic girl. I also run a support group for parents of autistic girls - so let's be clear that we both share the view that girls are poorly cared for within the autism (and educational) community

My daughter has been out of school for 2 years - while we fight for her to get support - I am living through the trauma of lack of support for autistic girls daily - and supporting families in the same horrendous position

So yes I know that 'quirkiness' can mean autism. Of course. But there do have to be some diagnostic criteria that make it clear what 'autism ' is.

My daughter struggles in a way that goes way beyond 'sensory ' difficulties. She can't cope in group situations at all that is why she is lonely and cut off at home because school does not support children like her. She has severe sensory issues that make the classroom unbearable - also - she will never have a large group of friends who can't guess she is autistic as the OP states.

It would be absolutely wrong of me to say the OP's child is not autistic I don't know her - but I do know girls who have a diagnosis now who i personally am not sure need one.

The point here - is that on this thread I agree the OP is really wrong. Autism can't suddenly begin to exclude those who suffer most from being autistic.

And an individual who is married, has a great job but has relationship struggles due to neurodiversity absolutely does suffer a lot less than those with more profound autism.

@StarlingTheConqueror of course you can be disabled without being physically disabled.

My child is at risk of serious mental health collapse due to her autism - so i understand this> Of course someone at university could be disabled but 'coping' day to day. But I do not think they have the same level of disability as those who will never make it independently to university.

I think we have to have honest conversations about this.

At the moment I'm not sure if my autistic child will ever make it back to school. this makes me incredibly sad. So I do struggle when I hear of a child at uni with lots of friends - and their parent is angry at a portrayal of love on the spectrum including 'more ' autistic children.

Ultimately I think the autism description needs a lot more nuance if it is stretched to include people who are functioning so well day to day.

And my child is absolutely not coping day to day - but I think could 'cope' with the right support (which they are not getting) - so it is a very hard and complex situation.

@Neuronimo I really want to add (as I completely agree with your response to me) that my child who is autistic is absolutely socially motivated.

She has friends - a few, who I support her with in a way that is probably much higher support need than most 11 yr olds - she loves being with other kids who she knows.

but - there is absolutely a a difference between how she socialises and neurotypical children. Isn't it important we acknowledge that?

Yes, I work in a specialist intensive support setting and am in the middle of a related masters degree. To be honest the taught content of my masters also barely touches the population I work with, but access to all the research articles which would otherwise be behind pay walls is so eye opening if you know what you want to find out about.

Some of the Autistic people I work with have chromosomal variations and genuinely severe intellectual disabilities, but others probably have only mild intellectual disabilities if any - many have such intense sensory overwhelm, fragmented processing, executive functioning and social communication issues that this is actually what presents as learning disabilities (and in fact probably caused many problems with learning because the traits are so extreme they are barriers to language learning and engaging with people and the wold as a learning environment, even with every conceivable adjustment). Some of the Autistic people in this group can do and remember things I can't, but become overwhelmingly distressed if someone stands in the middle of the pavement chatting on their normal walk to the setting, or if the week start with a bank holiday so Tuesday is essentially Monday...

Being neuroaffirming means recognising and accepting people as they are, not identity politics and pretending the inconvenient section of the Autistic population don't really exist or trying to push them out of the conversation about Autism.i

Wow @HaveYouFedTheFish love to read this - this is exactly the sort of research I'd love to read more about.

My child can appear not to have a learning delay if we are in a small family setting (so often my family seem to fail to understand she has cognitive struggles at school) - but at school is completely unable to follow what is going on.

How are they being ignored?Those more likely to be ignored are those who have been let down massively in the diagnosis process, left unsupported with nothing to struggle massively, left and let down throughout services, vilified by the media and social media, abused and bullied in society, having to fight for crumbs …

The group with a learning disability too don’t tend to be the ones doing that. Yes it’s beyond tough but how are they being ignored? They have a high level of care.

Oh and autism has to impact life severely to meet the diagnosis threshold so autistic people that don’t have a learning disability do have severe autism. I know my children absolutely do.

Fascinating. I have related professional and personal experience but some of it is potentially outing.

What do you think of the "fix" some are suggesting of a single separate "profound autism" category? I have two severely disabled autistic children, one with a clear LD, but one more like how you describe (but nowhere even remotely close to "high functioning" / old style Aspergers etc). I worry that this child would still be pushed out as he wouldn't be considered "profound".

I personally think we should push back the other way, and recreate an Aspergers category (although not named after a NAZI), as I really think that group's needs are more separate than the group for whom the autism diagnosis originated (both profound and the middle group).

My son is Autistic. Diagnosed at 3 and under the Children with disabilities socail care team. Let's presume the former means he is disabled. He has a blue badge social worker and has never stepped foot in mainstream school.

His sister has a higher than adverage IQ. Goes to mainstream school and only just scored within range on her ADOS at 6. She is explosive, clever, and has lots of friends.

I feel increasingly that neither of my kids sit within the Autism community. One severe. One high functioning ( both banned terms). Their condition presentation is polar opposite. The only thing that links them is totally misreading situations and people.

IDK. I feel there is a element of only seeing things from your own prospective. "I'm clever with a job, family and have Autism and therefore this is what Autism looks like. To say Autism looks like being non verbal insults my intelligence". Of course the non verbal person gets to say nothing as has less of a ability to communicate.

I think my kids sit better under the SEN community. They struggle in their own ways and it's very hard for individuals to take offence to that statement.

I don't think anyone who diagnose people would say that a common trait of Autism is a high awareness that different people experience life differently and a uncomfortable fact might be that lack of seeing things through other eyes comes into play here. However I'm prepaired to be shot down by the inevitable "I have Autism and I have no problems with socail interactions and have a very deep understanding that all humans experience the world differently". At which point I have to ask what exactly Autism is. Ten years ago when my son was diagnosed it was a socail communication difference. But on my last Autism training from the NAS it's more that there's a long list of things that you may or may not struggle with.

Clever, working, married, socail butterfly etc it doesn't matter to me. The whole umbrella is so vast it becomes unrelatable. The only thing that still pisses me off is people saying "we are all a bit Autistic". Try telling my son that who could not tralk at 8 or read or write at ten..everyone isn't a little bit like him.

Yet their is a criteria to meet formal diagnosis so that should never be brushed aside. You can not be diagnosed as your a little bit shy and very clever. Which I feel some people would like push as a agenda. A diagnosis is a diagnosis. I just feel neither of my kids are relatable to any of the loudest voices.

Maybe because people who kids hurt people don't like to shout about what a gift Autism is? Or the parent of the non verbal 14 year old in nappies is praising the gift of Autism? I don't know. Just musing.

My son’s autism affects him very significantly. He is very obviously autistic. He will never live fully independently.

He’s 20. He’s never had a partner and is worried that he never will. Recently his friend tried to set him up with a girl. The girl replied “sorry but I don’t date people like you”.