To find this view re autism frustrating

I think PP is referring to children like mine.

My son is front, centre and all angles of everything we do. Everything. And I wouldn’t have it any other way.

He does have challenges, but there’s no two ways around it - those challenges make it challenging for the people around him too.

When you’ve got a 9 year old, who is the same size as a 15 year old, tearing your hair out because his porridge is the wrong consistency. Or biting you because he liked beans yesterday but doesn’t today, that is a misfortune. Whether you like the phrasing or not.

I can’t be left unattended with our son for any length of time, because he’s stronger than me. When I get him dressed, my partner stands guard close by incase he needs to rush in.

They’re not just his challenges. They’re all of ours. He has no siblings, on purpose, because it would be a challenge for them too.

So yes, we absolutely love him to the very end of the universe, but it’s not unreasonable when talking about children like him to recognise how very difficult it can be to be in their lives, and it’s not unreasonable that people who don’t live like us are not envious of our situation.

No, of course there aren’t. I agree. It is just immensely frustrating to see the other “half” of the autism experience brushed under the carpet. People do not like the reality of profound autism.

There is a difference between acknowledging that some disabilities bring additional challenges and repeatedly framing autism itself as something that is inherently negative or something to be grateful to have avoided.

When people hear repeated statements that autism is a "curse", or that someone is glad their child does not have it, it contributes to a wider message about autistic people and children: that their existence is something undesirable.

That is the stigma I am objecting to. The kind of stigma that has already affected my 6 year old when she understands so little.

I absolutely understand wanting to protect your child from suffering. Every parent wants that. But I disagree with the idea that autism is simply a tragedy to be avoided. Autism is not just a list of challenges. Autistic people have humour, creativity, insight, joy, relationships, passions and their own unique ways of seeing and engaging with the world. Those things matter too.

DS doesn’t have an intellectual disability and didn’t have speech delay, but he’ll probably never live independently.

There are more than two types of autism.

I do agree the present meaning of autism is too broad though. It’s not enough to say DS is autistic as nobody knows what that actually means now in terms of needs. How can they?

I’m autistic (what would have previously been Asperger’s) and utterly detest the “autism is a gift/superpower” narrative. If people want to see themselves in that way that’s fine but it must be clear that it’s how they view their own, and only their own, autism (and same goes for every other kind of neurodivergence or disability).

However what’s always really clear throughout these kind of debates - including on this thread - is that the people who are in the middle are largely forgotten and left out of the discussion.

It’s always high IQ, often late diagnosed, Asperger’s type vs. severe/profound autism, incontinent, non-speaking. Number levels aren’t routinely used in the U.K. but it’s what would be level 1 vs. Level 3+.

There are also many people who land somewhere in the middle and they just seem to be forgotten.

Both my kids are in between and if given a level would be level 2. Both are exceptionally bright but both have needs that go well beyond what the old Asperger’s criteria covered. Their adaptive functioning is too low, difficulties in early childhood went well beyond social communication etc. People think all of the “bright and verbal” crowd are fairly low needs but it’s really not true and it’s not just burnout due to masking, social anxiety etc (not that those things don’t absolutely suck). Even within this “in between” space, one of mine has significantly higher needs than the other; they have numerous complex comorbidities though and it’s near impossible to disentangle those from autism entirely. On the surface you would think one has no speech and language difficulties and some would then immediately stick them in a category of “shouldn’t be diagnosed”.

Both kids are Gestalt Language Processors but with their sky-high intellects they have huge mental libraries of complex sentences and scripts so their language appears exceptionally advanced. However, their receptive language (what they understand) is below their expressive language (what they can say). Certain areas of receptive language are many years below chronological age. They have difficulties with transitions (one, severely). Both have areas of incredible talent, but one is too disabled to do anything with it really, and the other has substantial barriers to reaching their potential and will probably not have the career and opportunity they should have because their barriers are substantial. Both require specialist schooling. One has challenging behaviours and will likely need significant levels of care throughout their life; maybe both will, we don’t know yet.

There are also lots of people in this “in between” space who have a whole range of cognitive and verbal ability. Some will have a learning disability, some will be average, you’ll have the whole spread.
All will look different from each other.

So, can people please stop pretending that bright autistic people that can speak are all “Asperger’s type”, only really struggle with social communication and mental health, and that all of those very significantly affected by autism also have an intellectual disability and/or are non-speaking? There are people out there who don’t fit either box and I tell you what as well, there are no services, very little schooling options etc for kids like mine with the more unusual profiles. I know there’s a lack of options out there for all autistic people but there would be more for my kids if they had either lower autistic needs OR lower intellects and very obvious language delays.

I don’t know why this middle group aren’t really talked about - I suppose because they don’t really fit either side of the argument and typically neither have parents wanting to shout about what a gift their autistic existence is, nor those talking about caring for someone with that profound level of disability, and I suppose they will have - to varying degrees - the ability to understand what their parents and carers are saying about them, so people are less likely to be talking about how hard they are to look after and so on. Also the autistic adults in this middle ground are typically neither the loudly self-advocating-online type, nor very immediately obviously apparent when they go out in public as a group from a residential home for example, so they’re just sort of… hidden.

I’m behind them all the way. They are often the ones with the fewest resources and the least energy to fight. There are two autistic communities as far as I can see. The diagnosis needs to be split.

Thankfulky there is more than one autistic community parents and care givers are fighting back and there is a growing on line community of parents and care givers of children and adults with ptofound autism

I didn't say I have "access to a more virtuous love because my child is disabled", I said I know how to value, appreciate and love an autistic child in a way you clearly don't understand.
Since you have resorted to insults and clearly dont understand what it's like to raise an autistic child, I will leave it there.

🙄 Good grief

A consultation with the “autistic community”

God save us. We all know what that community looks like and it’s obviously not going to be spearheaded by all the autistic individuals who are incontinent and banging their heads off the bloody walls now is it?

I'm sorry you can't see or understand this kind of love.

You are so high and mighty and haven’t a clue what you are talking about. What a pathetic thing to say. You don’t have access to a more virtuous love because your child is disabled.

There are autistic people in my life who I love and value. I know families who are fortunate enough to have a child on the, quite frankly, better end of the spectrum. And if my child were autistic I’d love the bones of them just as I love them for who they are now.

Quite obviously, to any sane individual, I am still glad that they are not autistic. Just as I am glad they don’t have Down’s Syndrome, or were born missing limbs, or blind.

”Mother relieved her child isn’t disabled” is not the headline of the century.

As to similar genes, I do find it interesting and I still think it would be preferable (to ridiculously long waitlists and pathways) for earlier diagnosis if genetic sequences could be identified and tested for.
However, as I read in the Guardian just last month:
Simon Baron-Cohen’s team faced a backlash over a plan to sequence the genomes of 10,000 autistic people, which eventually resulted in the project being dropped after a two-year consultation with the autistic community.

I’ll shout it from the rooftops that I’m glad my child isn’t autistic.

Well I'm glad your child is not autistic too, because every autistic child deserves to be raised by people who love and appreciate them for who they are, and see their value, not just a deficiency.

You are entitled to talk about the devastating experiences you have witnessed, and I am not asking you to pretend those realities don't exist.

But repeatedly describing autism as a "curse" and saying you are glad your child does not have it is not just describing your experience. It reinforces the idea that autistic children are inherently less desirable and that their lives are defined by what they cannot do.

My daughter is autistic. She is not a tragedy waiting to happen, and she is not a lesser version of a child. She is a unique and valuable human being whose life has meaning and worth. And her autism is part of that. She has a different way of viewing and perceiving the world around her. Her challenges are part of her experience, but they do not define her, and they certainly do not make her life a misfortune to her parents. We are so grateful to love and know her for exactly the person she is. I'm sorry you can't see or understand this kind of love.

I agree with you.

I have two relatives diagnosed with Epilepsy. One works full time, has a family, socialises, basically leads a 'normal' life as their condition is well-controlled with medication. The other has multiple seizures every single day, is unable to work, go out alone or live independently. No one could reasonably argue these people are having the same experience, but I can't imagine anyone trying to tell the first person that they shouldn't be allowed to refer to themselves as having Epilepsy.

No one has said your daughters existence is a tragedy. No autistic child is inherently less desirable or less valuable. Nobody has said that. That is something you are taking from the very normal phenomenon of being grateful that your child is healthy and will not have a more difficult childhood than other children.

Of course your daughter is wonderful but if you could choose for her to not face the extra challenges I'm sure you would. Nobody wants extra challenges for their children and given the choice no one would choose autism if they were given the choice. That's why people say they are glad their child doesn't have autism, not because autistic children are less desirable.

You're putting words in people's mouths and it's you yourself that can't understand the distinction between "I'm glad my child doesn't have something that will make their life more difficult" and "autistic children are are a tragedy and less valuable as people"

Rainman was based on a real person called Kim Peek. He has the same underlying cause that I have for my autism, virtually everyone with that diagnosis will have autism as the genes are similar

I am not making sweeping generalisations. I have said what my opinion is after working with many families absolutely ruined by autism. It is an honest to god curse on some people’s lives. You and your daughter make no bearing on my opinion that I am very glad my child isn’t autistic.

“Challenging” is the understatement of the fucking century. A crossword is “challenging”. A child committing suicide because their daily life was a sibling who destroyed the very home around them and screamed non stop, or smeared shit on the walls- this isn’t “challenging”. It’s an absolute tragedy.

I’ll shout it from the rooftops that I’m glad my child isn’t autistic.

Also the charchter of Raymond was shown to be very disabled by his autism
Whilst he had an extraordinary talent with numbers
He was incpacitated in almost every other way.

Rainman was based on a actual person
Its just one representation of autism and there are so many different representations

DD has autism. We refer to it as a gift because DD does. Intellectually she is in the top 0.5% of the country. It can be debilitating. Some days are a struggle. We build in techniques to deal with those days.

What we call it and how we deal with it is a matter for her and her close family / friends / whomever else she chooses.

Telling her she can't manage it in her own way and own it how she wants to is as bad as saying it's over diagnosed / everyone has traits yada yada.

The pop culture idea of autism is Rainman - a reclusive, obsessive closet genius who is misunderstood.

This is what a lot of people think of as autism, but it's just not true. Autism is a developmental delay, a deficit in understanding theory of mind/emotional intelligence. It's very hard for people to deal with and it's nothing like the films suggest. It's certainly not an "add on" to anything. If you're a genius you're gonna be more of a genius if you're not autistic, because you'll also understand people better.

I think the pop culture narrative of autistic people being tortured/misunderstood gifted individuals is very comforting to a lot of people though...