To find this view re autism frustrating

I think siblings are often the forgotten ones, and i mean no malice in saying that. While dd doesn't have what I'd call 'profound' autism, her autism has nonetheless had a huge impact on her older brother. He opened up to me recently, after a family holiday which saw the usual daily meltdowns, saying that although the positives outweighed the negatives, he wasn't sure he'd want to do a similar holiday again. He said: "I do love her, Mum, and I'd do anything for her. But it's hard when she's kicking off, and I keep it in, but it does bother me, and I do get embarrassed, and I just try not to show it. Because I know how much harder it is for you and dad." He made me so very proud and yet completely broke me, all at the same time. We try so very hard to give them both the best of an upbringing in difficult circumstances, and think we're doing ok, and then you hear that truth spoken directly to you and there's no escaping it. Ds has had to step in too often and help over the years. I truly hope he's not sitting on resentment, or worse.

No. I'm asking you to reconsider making sweeping negative generalisations about autistic children and their families.

I'm sorry that you witnessed something so devastating. Of course some situations involving autistic children with high support can be incredibly challenging for the individual and those around them.

However, what I am objecting to is moving from those very real experiences to a broader message that autism itself makes lives worse. There are many different experiences and stories to tell.

Talking honestly about challenges is important. But there is a difference between describing the reality of a particular family's suffering and making generalised statements that contribute to the idea that autistic lives are inherently less valuable or desirable, or that autistic children are simply a terrible misfortune for their parents and siblings.

Well, I wish us all 🍀
I am struggling and would not wish parenting of any teen - NT or ND - on anyone right now! 🥳
Rigid thinking, bedrotting and anxiety, mixed with puberty, make for poor bedfellows. Add sibling rivalry and autism presenting differently in brothers and sisters...🤯
Glass children is also a well known phenomenon.
And then the illusion of inclusion in education where everyone is catered for because noone is.
Grabs the 🍷and looks forward to the joys of school refusal in 3 weeks time....

i think you have been misled.

Experts do not think that masking is fictitious and they do think that girls have communication difficulties (I am an autistic woman and have many communication difficulties).

There is however a lot of debate on where the diagnositic threshold should lie.

I’m not sure why you believe girls are being “undiagnosed”. There is no evidence of that happening. Similarly, I’m not sure why you believe that autism diagnoses are being created for equality. All that has happened is that that the scientific understanding has grown and with that the diagnostic criteria have evolved. There is no evidence of some kind of conspiracy to create autism diagnoses for some kind of policy reasons.

God it's so saccharine and patronising isn't it? My it's so hard watching my 12 year old struggle with stuff that her peers manage naturally, and the worry about her future is always there.

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"

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.

Well, this is going nicely…

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...

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

It's different if a person chooses to see it as a gift for themselves. Just like how someone can say they don't see themselves as disabled because of autism or any other condition. It's not okay to say it generically. It's great for your DD to see it that way for herself but others feel that autism really disables them and to say their disability is a gift really minimises their struggles.

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 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

Oof. Autism in film and TV is a whole new thread.
You have your

high functioning physicist Sheldon
high functioning surgeon Shaun
genius real life inspiration Temple
anxious teen with special interest 🐧 Sam
echonalia child Brick
genetic hereditary components Maurice/Joe
non verbal meltdowns Rosie
autistic savant Raymond

I've seen them all.
Truth is, my son can be all those tropes in one sodding day.

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.

Similar to my sons genetic condition
Although how it impacts people will vary massivly.

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.

But there are multiple types of epilepsy! Epilepsy is an umbrella term, but to have a good likelihood of getting the right treatment you need to know the cause and the seizure type (and some types are treatment resistant).

Causes range from brain injury or tumour to congenial disorders ranging from foetal exposure to toxins to genetic causes. The genetic causes have wildly different presentations -

Dravat syndrome,

https://dravetfoundation.org/what-is-dravet-syndrome/

Lennox Gastaut syndrome

https://www.orpha.net/en/disease/detail/2382

West Syndrome

https://pmc.ncbi.nlm.nih.gov/articles/PMC8343679/

Some genetic differences cause combined epilepsy, intellectual disabilities and Autism, which is a triad of commonly co-occurring conditions when there is a chromosomal difference. These are some types of genetic epilepsy syndromes:

https://epilepsyfoundation.org.au/understanding-epilepsy/rare-and-genetic-epilepsies/genetic-epilepsies/

Seizure types:

https://medschool.ucla.edu/articles/news/the-different-types-of-epilepsy#Epilepsy-Types

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'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.

🙄 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 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.

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

No, I don’t. And I didn’t want to. Perhaps you should mull over your lack of experience with families on their knees with profoundly autistic children. They never have a voice in these conversations- they’re too bloody broken and exhausted to, and society is only interested in the quirky autistic savant, not little Josh who grew into a hulking violent adult who still has a dummy, destroys every piece of furniture in the home, and smears on the walls.

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.