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!

I have never watched the show and wouldn’t. I thinks a dreadful concept.

They are ignored wuthin the so called autistic community
Which is why there are now seperate autism communities

@Pepperedpickles I absolutely understand that - my daughter is autistic and my brother/ it runs in our family. Both my daughter and brother are 'high functioning' yet absolutely very impacted by it - my child has been diagonsed since early childhood.

However - it is more than sensory issues, it is a communication disorder (I don't like the word disorder but..it is a difference) -and as I said, if you don't in some way struggle with the social/communication aspect, if you dont' come across as at all different to others - you are not goign to meet the diagnostic criteria.

social/communication - plus rigid/ repetitive interests - stimming - my child has all these issues - in a way that is very clearly marked compared to NT children.

Of course there are varied ways of autism expressed in a person but there are a core of traits otherwise it wouldn't be a single condition.

If you want to see part of the answer to your question "How are they being ignored?" watch I Am Not OK on iplayer

How?

It’s the other way round. People like my children are the ones being ignored in the so called autistic community and society and in services too!!!!

How are your children being ignored?

You have absolutely no idea how much those with "severe" / "profound" "low functioning" / "classic" autism are sidelined by the autism and SEND communities. If you think we just get "high care" from services automatically you are deluded.

Ok fine.

How are they being ignored? The fact you have to ask that is laughable.

You get care. Kids like ours don’t until they’re near death.

Do we? Is that so? A lot of our community actually only do get care if they or their families would be seriously injured or die without it.

I've been in meetings where adult social workers have laughed at the request that middle aged severely autistic / LD men get care outside of their very elderly parents because "no care home will take someone that challenging".

Ooh, can I join? I'm halfway through a Masters so also doing research in autism and this is something I've been thinking about a lot. I don't think the "profound autism" category would be terribly helpful because I suspect it would only be applied to those with a severe intellectual disability. I also think it would be a further way to squeeze out the "medium" / "substantial support" / "Level 2" or whatever other descriptor people want to use for this group (into which my own DC falls, that's what's on her diagnosis).

Temple Grandin's book The Autistic Brain touches on the shunting of LD into autism and autism into LD. "A Columbia University study of 7,003 children in California diagnosed with autism between 1992 and 2005 found that 631, or approximately 1 in 11, had had their diagnoses changed from mental retardation to autism. When the researchers factored in those subjects who hadn't previously been diagnosed with anything, they found that the proportion of children who would have been diagnosed with mental retardation using older diagnostic criteria but who were now diagnosed with autism was one in four." (Her emphasis.)

In other words, it's not just that people with severe forms of autism are being pushed into a label of LD / ID. It's also that people who would have been categorised as LD / ID previously are now being recognised as autistic - which should make a hugely positive difference to things like environmental supports and teaching methods, because this group can now access* autism-specific teaching and they or their carers can advocate for sensory-friendly environments. My fear would be that with a "profound autism" separate diagnosis we would essentially return to a scenario where this group are lumped together and their needs not fully met. I think the theory of recognising commonality within autism, albeit some traits dialled up to 11 in some people, that no one theory is universal, and recognising that some will have comorbid conditions, is the better option (although I recognise that it is often poorly executed).

*In theory, and in an ideal world - the reality is that few people get the support they need no matter where they fall within the spectrum, which I suspect is why this entire discussion exists.

Fuck off OP!!

Yes! This is all so interesting. Would you support using levels of autism?

I definitely agree about recognising the commonality of autism and I do not deny that those who have low support needs are still autistic (and still actually do need those support needs met!) I particularly think mainstream schools are awful, usually torturous places for children with so-called "high functioning autism".

I'm autistic and I love it. I get really emotional watching it. I feel like autistic people generally have a level of pureness that is so magnetic and I just love watching people thrive the way they are, with their loving families and their eagerness to explore new things - including relationships. It's incredibly heart warming and done very sensitively in my opinion. It doesn't feel exploitative.

I work with moderate - severely autistic young people and I and my colleagues love the show. It gives us hope that our students could have a meaningful relationship. I think it is done very sympathetically and not at all laughing at the participants. In my experience all the people in the show are higher functioning- some live alone, can drive, hold a conversation .. All I can wish for my amazing students .

Same, many of the cast members have also spoke out about the criticism and are perfectly happy with the show and how they are portrayed.

Watch more than one episode. You're wrong. It's a brilliant series.

They are ignored in scientific research, which is proveable and has been discussed. As time goes on the cumulative effect of this on services increases. People, including policy makers, love to be able to say "research indicates" without looking too closely into who exactly the research participants were. Peer reviewed scientific papers will report a study analysing the relationship between two autistic traits and unironically list the data gathering method as "questionnaires and an auditory load task" or whatever, and even analyse weaknesses in their study design and draw conclusions about Autism and offer suggestions for further research without once explicitly spelling out that the study's glaring weakness is that it excludes a large percentage of the Autistic population.

I am sorry to hear your children are struggling - I think the issue is that two things can be difficult but they can end up competing for inadequate funding and limited public understanding and attention. There's a conflict of needs.

If you watch "I am not ok" on iPlayer you will see that often there is no care, or vastly too little, for the people society assumes are comprehensively provided for. Often parents have to be in a kind of end stage crisis after years of carers resigning and (quite rightly in a minimum wage poorly supported job) refusing to attend due to risk of injury and demand an emergency residential placement as they've had no respite care for. years, and the residential placement might be. hundreds of miles away even for a pre teen.

Where care is provided it's often physical safety in the form of carers or a residential placement, but it doesn't mean the person's psychological or emotional needs are necessarily supported. I think "they have care" is sometimes unintentionally two tier as the person capable of masking would not want to lose their freedom of movement in return for a bed in a group home, but that's the care they're talking about when they say Autistic people with diagnosed learning disabilities are better supported. A lot of the Autistic people with diagnosed learning disabilities in residential care still spend huge amounts of time in crisis, attempt suicide, rotate daily through depression, euphoria, meltdown and anxiety.

Having your day structured by carers and a visual timetable and someone to help you with hygiene and so on doesn't mean being sorted. There seems to be an attitude from some people that it's more than enough for people with learning disabilities, but those without need their higher level needs supported. Of course good carers will generally try to address higher level needs, but generally won't be 1:1 beyond hygiene situations aside for specific activities outside the home and won't have any more resources to do so than parents.

My dd is autistic. Would be level one in UsA system and
would not be spotted
in a crowd. She is however very anxious at times and has social worries.
anyway I love the programme. It’s taught me a lot about my own daughter and the participants seem to be lovely people and their families.

I hope they do well.

far better than the fame hungry drama fuelled shit like love island.

They’re not competing for funding as the needs are different and 1 group gets funding whereas the other doesn’t- at all - until they are in crisis and pretty much near death in many situations.

This same group that gets zilch also gets vilified with their needs dismissed too. It’s frankly disgusting and needs to stop.

Thank you. You see the situation so clearly.

Where I am we use the ICD-11 notvthe DSM so we don't use levels.

An American commentator I follow on social media (an autistic woman with two autistic children, one "level one" and one "level three") was advocating for a level four, as people with much less severe needs than her son were level three as well, and she felt level four would be profound...

I know the Lancet commission recommended introducing a profound diagnosis back in 2021 and there has been much predictable controversy. The original recommendation was that it be for Autistic people who will need 24/7 care lifelong, but I've heard claims it would be for an IQ under 50, which makes no sense to me (not least because measuring a profoundly Autistic person's IQ "accurately" is impossible even if IQ wasn't already a fairly sketchy measurement in the general population...

As I said some Autistic people do present as more Autistic - as in they have every trait and every trait is dialled up to 11 a lot of the time, and the concept they could mask makes as much sense as the concept they can fly (or communicate telepathically as I've even heard suggested!) Some of these individuals in my professional experience have had their IQ measured at 70 - which is just on the boarder between mild learning disabilities and the lowcend of average intelligence, nowhere near severe learning disabilities which is an IQ under 35! Some of these people are (in my professional experience) more "profoundly" Autistic than some other individuals with diagnosed severe intellectual disabilities and autism and an absence of functional language, because of the severity of their traits almost all their waking hours. These individuals are also often non or minimally speaking despite having some non language, non communication related
cognitive abilities in the low average range.

I do not like the fact that the word profound is "forbidden" but I also don't think it should be tied strictly to a certain IQ because it isn't as simple as profound Autism= Autism plus moderate to severe learning disabilities plus disorder of functional language. It's already freely diagnosed. I don't think profound should just be a shorthand for an existing ICD-11 diagnosis, it should be about the profundity of the traits and the proportion of life that those traits are overwhelming even under the best realistically possible environmental circumstances (managed sensory environment, clear structure, visual supports, routine).

That's what I think, but it's wildly controversial of course.

I do think it's a problem that the population I've described get dismissed as just intellectually disabled and waved away with the assumption that their needs are fully met if they're clean and housed and fed, their meltdowns aren't seen as being indicative of as valid a level of suffering as that of people able to explain their suffering in words (at a later point). This seems deeply questionable.

Oh please.

The dismissing and waving away of need is 100% aimed at autistic people without a comorbidity of an intellectual disability on top. The abelist abuse and discrimination they get is disgusting.

Your post also pretty much illustrates in a nutshell how levelling autism is impossible and a ridiculous idea.

The few individuals my setting can't support end up on closed psychiatric wards, generally for the rest of their lives.

It's fairly common for self injurious behaviour to lead to retinal detachment and blindness by age 40.

One young man dug through his forearm to his wrist bone with his finger during the night.

Slow processing speed leads to staff being attacked resulting in broken bones and the antecedent being identified as something that went unremarked four hours before.

I do think there are levels of severity, yes.

I have a friend with a young adult son who has autism. He works, drives but is definitely quirky. My friend loves the show because it shows people like her son who are out looking for what they want in their life.

I find this really contradictive. You don't like the programme because you think it takes the piss yet want young people like your own asd children on it.