As always, these are simply my thoughts only…

I am so frequently astonished at just how much ignorance there is in the autism world. I find myself questioning, over and over again – why, why, why? Surely – surely – it’s not that complicated? There isn’t that much that one can say that is irrefutable when it comes to ‘statements’ about autistic children and/or adults, but equally clearly (I think) it’s not too difficult to understand how much is so wrong in our current society, so I feel I have the ‘right to write’:

Why are autistic children told that their future will be bleak…when there is absolutely no way on earth that anyone has any clear idea of what the future holds? Shame on any professional who professes to have a crystal ball and pretends that they can see the future.

Why are autistic people branded as having no sense of humour…when the opposite is so clearly the case for so many people?

Why are autistic children deemed inferior simply because they find communicating verbally problematic…when in many cases if the rest of the world took the trouble to learn their ‘language’ then communication could be as effective as talking?

Why is anyone seeking to ‘prevent’ or ‘cure’ (eradicate?) an entire, rich, resourceful, enlightening population without whom who knows what state the world would be in?

Why is honesty seen as something that should be divided up and only given out in segments, while the rest of the time lying is somehow ok? We tell our children – over and over – tell the truth, honesty is a virtue – and when they speak their honest minds they are told “you’re being inappropriate”…”you’re rude”…”you’re too honest”…

Why are so many autistic adults denied an identification of their very self – a diagnosis of autism – when it can be such a meaningful and life-changing experience?

Why is glorious solitude forcibly disrupted for the child for whom others have decided that ‘peer relationships’ are somehow more important than low levels of anxiety?

Why is there an expectation and sense that ‘fitting in’ is a desired and positive state of being, while acceptance of difference remains a pipe dream for so many, leading to debilitating and crushing mental health problems that could be avoided?

Why are autistic children and adults told – “no, you can’t be autistic, there’s nothing wrong with you” – as if there was something inherently ‘wrong’ with being autistic?

Why is inclusion more about physical integration and school attendance rather than acceptance and flexibility to meet different needs?

Why are crucial employment opportunities denied to so many autistic adults as a result of the extreme disadvantage individuals are at because of typical traditional recruitment, job descriptions, and ways of managing employees?

Why are parents sent on generic parenting programs as a means to reducing difficulties their autistic children are facing?

Why is there such a lack of understanding that many problems faced by autistic people are not because of their being autistic, but because of others’ lack of understanding?

Why do research funders habitually ignore or not engage with the autistic population when identifying what research needs to be undertaken?

Why are parents forced to spend considerable time and effort in fighting for their children’s rights when all they want to do is spend time supporting their children?

Why are there so few roles that demand high levels of autism understanding when it is clearly so important to the autism community?

Why are children sometimes forced to behave in ways that are actually painful to them – physically, mentally, and/or emotionally – just so they behave in ways that are common to their non-autistic peers?

Why is there an ongoing drive towards ‘autism awareness’ – as opposed to genuine understanding?

Why are there so few autistic individuals involved in all the strategies, training, policy development, legislation, and academic awards that relate to autism?

Why is the constant message to autistic individuals and their parents still so often rooted in disabling negative terms such as impairment and disorder?

I don’t think I am a particularly bright person. I think these questions are pretty simple. So – why – why! – are they still needing to be posed?

32 thoughts on “Why???”

    1. Working with Autistic adults, on employment and coaching, as well as being a parent of an autistic child, this may be the most spot on bit of writing I have read on the subject.

      Thank you

  1. You are one of the only people I have read that seems to totally get our children.i wish I could take you with me to every school meeting.i print off your blogs and hand them out to help teach understanding.well done and well said xx

  2. Yes Luke! Why?

    I feel that we autistics know in our hearts why…

    Lip service to inclusion and acceptance cannot replace “accomodation”… and that demands real effort and big financial, emotional and practical commitment.

    There is a ” feel good world” that is happy to live in self deception and applauds the tokens scattered in the direction of the “less fortunate”… the answer is to address why are there the “less fortunate”? could it be resultant from there being a” collective fortunate”?

    Facta Non Verba…

    Who is in the position to know what is needed? Only those who are in the position of need!

    Would that upset the power applecart!

  3. Yes. Yes. Oh, absolutely, yes. What a great blog. Sharing from Evelyn Ashford’s (Educational Equality) share on Facebook. Will be signing up to your blogs too. Thank you for understanding. x

  4. Some of the questions really ring true to me:
    “Oh, your child hasn’t got autism? That’s good, I’m glad she’s not screwed up like you….”
    “But you seem normal…!”
    “Do you have light therapy??” (Ermmm, I have Asperger’s)
    “Maybe your doctor can give you something for your meltdowns?!” (Or you could stop being an insensitive jerk by triggering them!?!)

    Definitely less awareness and more understanding required!

  5. I’m not autistic, but 2 of my children are.

    Being a parent to autistic children is heart breaking and difficult to the extreme, not because of the autism but because of every single point you’ve made here!

    It’s not their problem to solve it’s YOURS!

    (not literally yours, but NT’s)

  6. Fantastic piece, Luke. Understanding and acceptance is the way forward – not the ‘deficit’ model, which views everything as a negative comparison through the NT lens.

  7. I suspect the answer to Luke’s question of why there is so much overtly negative discourse autistic individuals and their family receive is largely due to the self interests of the medical profession. The negative, deficit and prominent medical focus of the autism discourse (and literature) makes people a lot of money and provides safe well paid careers to a lot people. Medical professionals have significant control over autistic people’s lives, despite the fact there is little evidence to warrant the pre-eminence of the medical professionals within the autism community. Autism is a lucrative commodity for people as long as the negative stereotypes remain. The medical profession simply have no motives to discuss autism in a positive way and give up their privileged position they currently occupy.

    I apologise Luke if I am being too cynical. I do greatly respect your opinion. Although I do agree with Nick Chown, autism in some cases for some individuals is a “disability”; no amount adjustments will remove the lost opportunities caused to a person by their impairment (I know you may disagree with the definitions I am using). e.g I can not be in a primary classroom while they are doing a music lesson, I will always experience intolerable pain from hyperacusis. (You will probably say why do I not wear fancy ear plugs).


  8. I should add that autism history has examples of medical professionals placing their own agenda before the benefit of other people:
    Leo Kanner choosing to ignore Hans Asperger’s work so that he could control the nascent autism field.
    Andrew Wakefield creating the entire vaccines cause autism myth.
    I would also argue PDA does the same, it turns autism self-advocacy and self-regulation into a medical condition for Predominant Neurotype’s control. Arguably the biggest scam of the autism industry, literally turning autism self-advocacy and self-regulation into the ultimate business opportunity. Why else advocate a label which is not widely accepted or legally recognised under Councils and NHS trust statutory obligations?

  9. Why?

    Is it because “You’ve met one person with autism, you’ve met one person with autism” so no one really know what it is either? I was diagnosed in 2014 and I’m still not sure what it is. Should I be? Do I really want to know? Do I really want to know all the answers? Enough to sign up for the MA this year anyway..

    Your own statement: “Autism + environment = outcome”.

    So what if ours was a fully integrative and harmonious environment community? Would this ‘utopia’ mean ultimately that autism would not exist?

    Am I really inseparable from my ‘neurotypical’ and ‘ableist’ society and if so, is it possible I will never be free of autism in this context? Because only by accepting I am in a ‘disadvantaged minority’ in a ‘broken society’ (for example) can I continue to perpetuate the condition known as autism. I cannot even state I will be free of a condition as long as my ‘broken society’ accepts that condition exists.

    I AM my society.

    Whether I am autistic or NT, as long as autism exists as a concept in society, we will continue to create this self-fulfilling prophecy, meanwhile coming up with as many questions “Why?” as presenting ‘symptoms’.

  10. I read this with so much sadness and acknowledgement. As a yet undiagnosed autistic parent of 3 autistic children, I have fought constantly for help, support, diagnosis and the dreaded EHCP’s.
    I have witnessed my children struggle with everything their classmates find easy.
    My eldest is now 18, I have a 14yr old and a 10yr old.
    I’ve found with the two who are girls it’s so much more difficult to get anyone to see there is an issue!
    This is the first time I’ve read any if your blogs Luke, and I am amazed at how you have managed to describe my family so well .
    With your permission, I would like to share this blog with my children’s school and their health care professionals. It puts into words perfectly how our world is.
    Thank you
    Becca x

  11. “Why are so many autistic adults denied an identification of their very self – a diagnosis of autism – when it can be such a meaningful and life-changing experience?”

    It is because the accountants in the health authority do not think we are worth it.

    I had a referral from a psychologist only to be told that there was no money for out of area diagnosis.

    Do these people know how devastating the “Your not worth it letter is?

    The doctors would like me to be diagnosed, I would like a diagnosis. The accountants say no. People with no medical, psychiatric or psychological training get to ultimately make the decisions.

    The real question is, “Why are the doctors unable to make the decisions?”

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