Why I Refuse To Light It Blue for Autism

The answer can be pretty well summed up with “Because the whole Autism movement, with all of it’s different sides, pisses me off”.

Do I lose my membership card now?

When I decided to write this piece, I thought I had better do a little research and try to really formulate my opinion with examples – but there are just so many different examples that it is near impossible to cover the whole subject, giving it the attention it deserves, without writing a novel.  So I am going to stick just with what I know and a few stand out pieces I found this morning.

One of the pieces I found was a blog that talked about Autism Awareness and Acceptance.  The author proclaims that whether you are on the side of Autism Speaks, or on the side of Generation Rescue, we should all realise that everyone has a right to their opinion.

If Autism Speaks and Generation Rescue end up being my only options, then on that day, I am going to kill myself.

Autism Speaks, the originators of Light It Up Blue, an event that lights buildings blue in order to raise Autism Awareness, are practically the anti-christ to Autism.  Don’t believe me, that the biggest and most powerful Autism organisation in the world could possibly be working against people with Autism?  Take a look for yourself.  If you go to their website, have a look around…  does this seem like a website that is aimed at helping people with Autism, or is it about helping parents of young children with Autism and corporate sponsors?

They state that “Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.”

Funding research into the cause of Autism is… well… probably fruitless at this point in time.  In ten to fifty to a hundred years, we may have the technology and knowledge that we need, but we don’t have it now.  Some funding should be going toward this, because this is how we learn stuff, but it should come after other stuff.  Helping people deal with the disabling aspects of Autism should be where our priorities lie.

Preventing Autism is something that usually seems to draw a pretty clear divide at dinner parties.  On one side, we have those who think “without Autism, then who would they be?  Their Autism is as much a part of who they are as the fact that they like computer games.  How do we separate that from them?” to “Autism is only a part of them.  If we can get rid of that part, then they will be normal.”

I found out I had Aspergers last year.

Actually, before I go any further, I need to clear something up right here and now.

High and Low-Functioning need to become terms that deal ONLY with exactly the number of hours of help per day a person requires.  NOTHING else!  I am so sick to fucking death of parents who tell people with Aspergers that their opinion doesn’t count because their child with Autism is “low-functioning”, while insinuating that the person with Aspergers is not.

I have more intelligence than the average bear and for that I am grateful but – I need extra processing time and my memory sucks dogs balls.  I can speak but – I had speech problems as a young child, and I still have times when I simply can not get a word out and need to write things down in order to communicate.  I am not violent towards others and I can bottle my emotions for long enough that my meltdowns are private but – yesterday I still punched a cupboard door twice in pure meltdown mode, and my worst meltdown moments involve cutting myself and suicide attempts.  I can get on with people but – I still have trouble forming friendships, and knowing what to do once I have one.  I can usually get through most of life’s everyday challenges but – last week I still had to ask my son’s school principle to help me out with an issue because when I tried to think of a solution, all I could see in my mind was a white space because I simply couldn’t process or navigate the situation.  I usually don’t need to cut the tags off my clothes but – I can’t wear wool, and my body jerks uncontrollably when I am over-stimulated.

I am high-functioning, but do not be lulled into the sense that this means the same thing as fully-functioning.  Thanks to my intelligence, I can fake normal.  This doesn’t mean I am not Autistic.  As a 35 year old, I may no longer be smearing my faeces on a wall, however my grandmother occasionally delights in telling dinner parties how I once did this on a regular basis.  I may not have been diagnosed with Autism as a young child, but do not think that this was because I did not have problems as a young child.  I did have problems, however they were seen to be “my” problem.  I was seen as naughty.  And I was punished accordingly.  For pure survival, I learned at a young age how to act normal.  That does not mean I am not Autistic.  It means I am intelligent and resourceful as well as being Autistic.

And for what it’s worth, I do not blame my mother, who was a teenager, knew nothing of Autism, and was doing what she thought was the best thing for me (ensuring I didn’t grow up to be a spoilt brat).

My own childhood is why I have such fears for children with Autism today.  I worry that trying to “cure” Autism is only going to lead children to feel as I always did – that we are in trouble for something we simply can not control.  That we are in trouble for being who we are.  That who we are is wrong.  You can’t deny that wanting a cure for Autism means that you think that there is something wrong with having Autism.  And THAT is something that only a person with Autism can decide – for themselves.

As well as Prevention, Autism Speaks also wants Treatments and a Cure.  My mother may have thought she was trying to “treat” and “cure” a “wayward child”, however she wasn’t.   She was trying to treat and cure a child with Autism.  And the truth is, however hard it is for parents to hear, there is no treating or curing Autism.

Growing up, I was consistently told that I had lovely manners and that I was a great credit to my mother.  Yee fucking ha for me.  Subjecting a child to treatments and cures and having them respond in a positive way doesn’t mean that they no longer have Autism, or that their Autism is getting better.  It means that they are getting better at hiding it.  They are getting better at acting.  I have no doubt that some of us deserve a fucking Oscar for our performances.  It doesn’t mean we are all better now thanks very much.  It is still all there, underneath, even if we ourselves can’t see it at the time.

Helping a child with their speech means that they may communicate more easily and effectively, but it is not going to cure Autism.  Dealing with the physical issues of Autism such as low muscle tone is going to improve a child’s life.  But having good muscle tone isn’t going to cure Autism.  Ensuring that a child’s diet is appropriate for their body will help a child feel better and this will go on to improve their behaviour and mental health.  But not feeling sick and not being in pain isn’t going to cure Autism.

Generation Rescue is Jenny McCarthy’s organisation.  There is so much shit (forgive the pun) on this website, that to try and pick one main point to display is near impossible.  Suffice it to say – Jenny feels that Autism is caused by gut problems and can be cured by fixing those problems.  As she was one of the biggest initial fighters against vaccines (a theory now discredited by everyone who has done any credible research, including the author of the original paper that started it all!), and also one of the first fighters for gut health as a solution, she has made a ton of money off parents who feel that their child has been cured by changing their diet (or probably more often, are hoping that their child can be cured by changing their diet).

I think that some kids are diagnosed with Autism when they don’t have it, and that for some of these kids, changing their diet may well work.  It is incredible how much misinformation is out there about Autism.  One of the fantastic changes in the DSM V is going to be the inclusion of some of the physical aspects of Autism.  Up until this year, many so called professionals thought of Autism as a purely social disorder.  It is not.  There are many physical aspects to the disorder as well, and while I generally loathe any type of “anecdotal evidence” because it is not evidence at all, I can’t help but wonder that there is a reason the kids I meet who I do not think have Autism (we don’t “click” in the same way that I do with kids who do have Autism), also show no physical signs such as low muscle tone.  These are also kids who seem to respond well to dietary changes to the point that they are considered “cured”.  I have no doubt that dietary grief can lead a child to present with signs of Autism.  This does not mean that they have Autism.  Unfortunately, I am not in a position where I can “prove” anything, and the professionals I know of are too busy making money to listen to someone with Autism.

Which brings me back to Autism Speaks.  They are also making too much money to be bothered listening to anyone with Autism.  Despite their statements to the contrary, they do not advocate for people with Autism – they advocate for the families of people with Autism.  These are two totally different things.

A lot of families are starting to come around and see things our way.  Even before I was diagnosed myself, when I was merely the mother of a boy with Aspergers, I wrote this blog on how I wished families would stop trying to “fix” their kids.  At the time, I thought that the communication problems I had with my son were because of his Aspergers, but it turns out it was because he was six lol…  Once I realised that I also had Aspergers, I realised that he and I have the exact same “type” (which is different to the “type” his father and brother have).  We actually do speak exactly the same language, and now that I can trust that, things are much better for us both.  However I digress…

Many parents of children with Autism simply piss me off, and Autism Speaks caters to these parents.

There is a child with Autism that I know, and while her mother is a friend, we have never really had an in-depth conversation about where she stands on such issues as these.  I am afraid to speak of it openly quite frankly, as pronouncing my beliefs in a blog is one thing – people can hit the back button if they don’t like what they are reading – but in real life, where this woman and I must work together, and like each other, I do not want to offend her.  Her daughter is low functioning.  I have seen the way this child is treated at school.  One day stands out in particular – she was in trouble for dawdling.  Getting past the fact that children on the spectrum are prone to not give a rats arse about whatever timetable others are on, it was obvious that she was not being deliberately naughty.  Her attention had been diverted.  However she was treated as though she was being naughty.  And I think this is a great example of the Great Autism Divide.

People with Autism, who just want to be given help where required, but otherwise left the hell alone to be who they are, will see nothing wrong with a child who dawdles.  Especially so a child who is not being deliberately naughty.  Sure, she needs to get to class on time, however this can be achieved with getting her attention in a nice way, and explaining to her that she needs to go to class.  She is non-verbal, however she is far from stupid.  And she’s a good kid.  Play it right, and she will do what you want her to do, when she can.

The way the teacher that day treated her though, was as though she was being deliberately naughty.  I do not need to imagine what it is like to have someone on your back all the time for not living up to their standards when you are trying your damn best to!  I know exactly what that feels like!!!

And so it hurt me so much when yesterday I read a comment on Facebook that stated that 20 hours of therapy a week is the bare minimum for a child with Autism (she was arguing that funding is drastically low).

Consider for a moment that you wake up in an alien world.  The aliens demand that you spend 20 hours a week learning their ways, even if it hurts or is uncomfortable or is plain fucking impossible.  How is that going to make you feel?

Now imagine that it is your own parent who is insisting on this torture?

20 hours of therapy a week for a child?  Highschool is only 23.75 hours a week for fucks sake!!!  Which is for normal teenagers, not Autistic children who already find the world over-stimulating.  And when the hell are they supposed to be educated?  Is this on top of their 23.75 hours of education?  An adult’s working week is usually only 38 – 40 hours.  And again, these are normal adults, not children who have trouble being in the world and need a lot of downtime at home.  Or is this for early intervention – for children under school age?  Fuck. That. Shit!

The end game here has nothing to do with the child.  The child is going to be stressed from having to deal with it all to the point where it will not work (even if the illusion is there that it is), and is going to feel like crap because their own parent feels that they need it all.  No, the end game here is that the parent wants a normal child.

I’m sorry.  I really am.  I am sorry that we don’t live up to your expectations of what having children was supposed to be like.  I’m sorry that we are different and difficult and at times, damn near impossible.  I’m sorry that we have needs that you do not comprehend and can’t control.  I am sorry that we take more effort and cost more money than normal kids.  I am sorry that you lost the dream of the perfect family – hell, even a half-way-easy family.

But we ARE different, and yes, at times difficult, even as adults.  And no amount of therapy and intervention in the world is going to change this.  We are always going to have Autism.  You may be like my own mother, and frighten your child into submission, or you may therapy your child into submission, but the Autism will still be there.

Which isn’t to say that therapy is a totally bad thing.  It is certainly not.  It is a wonderful thing.  It’s just that it won’t cure Autism, and 20 hours a week is about curing Autism, not about helping the child.

Speech therapy is great for helping children with their speech.  Occupational therapy is great for helping children develop muscle tone and navigate their way through the physical world.  If you find a diet that works better for your child, then use it!  People with Autism are more prone to gut problems, and not being in pain every day is obviously going to lead to a happier life!  Not to mention probably a longer one.  Psychology is great for older kids who are having trouble with their emotions, or social interactions.

Be careful though.  Especially with psychology.  Personally I think that Speech and Occupational Therapy should be therapist led.  They are more mechanical, or physical, in nature, and are therefore less subjective.  Diets should be changed with the child if possible, so that full feedback on whether or not it is working, can be given.  It also gives some control to the child so that this isn’t being done “to” them, but rather “with” them.

Psychology is the one where we need to be careful.  Is the particular therapy asking the child what the problem is, or is it telling the child what the problem is?  Is it trying to help the child with issues that the child is facing, or with issues that the parents are facing?  (Hint – if you are facing issues, get your own psychologist).  Most of all – is it a therapy that a majority of other Autistics have found useful?  Not other parents, but other Autistics.  Beating a child into submission is obviously great for the person doing the beating, but it’s not so good for the child who is beaten.  Psychological therapy is the same.  Seeing the results you want does not necessarily mean that the therapy is a good one.  And don’t go on the word of only one person with Autism – some of us are fooled into believing the hype just as the general community is.  Ask around and get a general consensus.

And so we come back again to the blog where the author believes that we should all just get along.  I don’t think this is true.  I do not believe in Electric Shock Therapy for anyone, but particularly for people with Autism.  However if I was to shut up and get along, I would have to keep my mouth shut when this is proposed as an acceptable therapy technique.

Yeah, I’m not going to keep my mouth shut when I believe that people are doing more harm than good, even if they are well-intentioned.  My mother was well-intentioned.  It doesn’t mean she didn’t royally fuck me over.

As for “Lighting It Blue For Autism”… I love that people are trying to help get the word out there.  I only wish that they did a little more research first.  And not from organisations such as Autism Speaks, who think so little of people with Autism that they fire mothers who have a child with Autism, and refuse to listen to people with Autism. As for Jenny McCarthy – well I can’t figure out if she’s just a money hungry bitch and this is a good pay day for her, or if she’s a complete whack job.

I refuse to support hypocrisy, and fear, and con artists.  I refuse to support parents who are willing to risk their child’s health and safety so that their job as a parent is easier.  And I dead fast refuse to support organisations that want me dead.  Which, until such time as we invent one of those science fiction machines that can change your genetics, is the only way we will ever cure Autism.

I wish people would learn about Autism from those who have it.  I especially wish that organisations would start speaking to those who have it.  And until such time as they do, I am not lending my support for specific awareness purposes of such organisations, lest people see that, and encourage or donate to these bastards because of it.

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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Posted in Autism, Disability, Personal
29 comments on “Why I Refuse To Light It Blue for Autism
  1. Wow! What an amazing read. Thank you!!
    I am not autistic, my 3 year old son is. I am so in agreement with you on all this. I want him to be ‘allowed’ to be autistic because that is what he is!! Yes, he has to learn things in the same way as all children do, that hitting and kicking are not acceptable, that you respond when someone says hello, those sorts of things, but aside from that, why would we want to change him?? Then it wouldn’t be him, and that would be a tragedy!!
    I do, however, light it up blue, but I have also done my research on Autism Speaks, so I know all the things you talked about. I choose to still go blue because a few buildings in my city do this and it has raised awareness, which hopefully might lead to acceptance one day!! I do it for autism though, not for Autism Speaks, which is nowhere near as well known in the UK anyway!
    Thank you for making me feel like I am doing the right thing with my son. We want him to grow up to embrace his autism, to embrace and accept that it is part of him and to let no one tell him that he should be ashamed of it. We want him to feel comfortable with who he is. After all, he is not broken, he simply sees the world from a different angle. And who says that his angle is wrong??

    • Laura – I understand about lighting it blue raising awareness in general – I will admit to smiling in solidarity when the William Jolly Bridge lit up last year :). As general acceptance, I am all for it (though on Facebook, a friend, my husband and I are deciding that perhaps we should light it up purple instead lol) – I just don’t want to support organisations that do us more harm than good (in my opinion).

      It sounds like you are doing a wonderful job with your son :). LOL – I was once in a waiting room and another child with autism came in, pushed another child off a chair, and then tried to take my son’s iPad away. He went to hit my son, and my hand automatically went up to stop him contacting, and I told him he couldn’t have the iPad. The mother huffed off with her son mumbling something about “not sharing”. I also do not think we are doing our kids any good by allowing them to get away with everything – that isn’t acceptance – it’s lazy parenting. The challenge for us (even those of us on the spectrum lol), is trying to work out what behaviour is naughty and what behaviour is a sensory issue… I have no easy answers for that one (doh!). I do think it gets easier to distinguish with time however!

      Thanks for reading 🙂

  2. martine dellard says:

    At last, a sane voice! Thanks for this, Madhatter

  3. Well, sane might be pushing it a bit far lmao :). Thank you 🙂

  4. basijas2013 says:

    What a read!
    My 2 boys are are on the spectrum and we try and be led by them. I will be thinking now about how we try and teach them how to cope with the world around them.
    Thank you for writing this.

  5. ouremuk66 says:

    Found myself agreeing to everything as I was reading this. Two of my five children have autism (one diagnosed Aspergers and the other the “new” just autism diagnosis (she is verbal and has no intellectual difficulties that we can see) I LOVE the fact that you have challenged the terms high and low functioning – it’s one label that I hate. My children are profoundly affected by sensory issues of all sorts and I have become a very outspoken advocate for them both, to the point of completely overthrowing (with the help of an outstanding OT) my young daughter’s school curriculum so it has been re-written for her, and not to “make her fit” with her classmates. She cannot comply with NTs and I have no real wish to make her do so, that is not who she is. I expect her to learn to control her violent impulses and direct them to inanimate objects rather than me and her siblings, and to seek quiet time when overloaded, and I am sure with support she will learn to do this, but I run a proverbial mile from anyone who tries to promise me they are trying to cure her. There’s nothing wrong with her!

    I have taken part in light it up blue but as part of twitter general autism awareness but I too have looked at Autism Speaks and distanced myself. They worry me.

    This was a great post.

    • That reminds me lol – I have to make a doona jumping thingy (I use very high tech terms lmao)… My son’s OT suggested getting pieces of foam off-cuts, and putting them into an old single bed doona cover and sewing it up, for the kids to jump on (etc) when they need to :).

      Thanks for commenting 🙂

  6. Linda Boden says:

    Thanks for writing this – I’m also frustrated by the prevalent attitude, at least among the “professionals”, that Autism is something that can be fixed. It can’t – and why should it? The way in which my son experiences the world gives him a unique insight about the human condition; he observes parallels and makes observations that often bowl me over. He is extraordinarily smart, like many Aspergers are, but this does not translate to school performance because schools are simply not set up in a way that facilitates optimal performance. If schools would change their focus to scholastics, and encourage actual study instead of focusing so much on social frippery, not only would students on the spectrum be able to excel, I suspect the NTs’ performance would improve as well.
    As far as parenting, instilling discipline and self-control is more important for an Autistic child, as they have to work harder at controlling impulses. I’ve noticed that some parents will allow their children to run amok, saying “Oh, he can’t help it, it’s the autism.” This is all down to parental laziness, I think.

    • I agree that schools are not set up for kids – any kids! Thankfully we seem to have found a half decent one where we are, but still – the whole “sit down, shut up and think how I tell you to think” is something I am not a personal fan of.

      I disagree that dealing with ASD is about discipline, though it depends on exactly what context you are speaking of. I do worry when people try to discipline the ASD out of kids… it simply doesn’t work. It makes kids compliant sure, but it kills them inside. I do agree though that some parents are lazy and use ASD as an excuse to not bother parenting. I think as parents, we have to find that happy medium where we recognise what is misbehaving and deal with that in one way, and what is ASD and deal with that in another.

      I remember when N was in Prep (pre-school), he wanted to take his sunglasses to school – as they are not allowed to have them at school, we had to work out – is this something that he “wants” (and therefore, complaining about it is misbehaving), or is this something that he “needs” (that is, the sun is too much for his eyes, and complaining about it is communication that this is an ASD issue and needs to be accommodated). It’s not always easy to work that out either!

  7. iamjusts says:

    This is well stated. I am not diagnosed but suspect I may have Aspergers. I have been researching what is out there and am shocked to see how cold psychology is towards people with Autism, blind to the fact that they are refusing to step into the world and mind of an Autistic person but demanding that Autistic person try to step into the world and mind of neurotypical people, and pointing the finger of a lack of empathy at those with Autism. Too much is done in the name of good without a proper examination of the underlying motives…

    • The whole “lack of empathy” theory is one that people on the spectrum are trying really hard to fight right now – particularly as mass media has started reporting crimes, and then immediately supposing the perp has ASD *sigh*. Thing is – most of us have too MUCH empathy (it hurts!), and we consider NT’s to be largely lacking in that area lol…

  8. Maria says:

    I really enjoyed your post/ article. I agree with everything you said! I feel that some parents wear their kids “Autism” badge like it’s a “get away with everything” card. Every child is different and I believe that more focus should be directed to what they can do while helping them cope better with what they find difficult. It’s a process. Awareness is helpful when it benefits the child. Here in Ireland, there are non-profit support organisations. I have found Jennifer Cook O Toole, author with Aspergers ( her family have too) a truly valuable insight on how the thought process works in someone like my son. Her books have given me the key to better understand and therefore provide the support my son needs…We have changed schools to one where his needs are not seen as any different from anyone’s needs. He is different not less. I never want him to have to apologise for what he’s not.

  9. Daeni says:

    ” Ensuring that a child’s diet is appropriate for their body will help a child feel better and this will go on to improve their behaviour and mental health. But not feeling sick and not being in pain isn’t going to cure Autism.”

    This is one of my biggest argument against the reasoning of a gluten free diet. Somewhere along the lines, people began thinking that gluten free diets would “cure” Autism. No. It helps a person feel better because it reduces inflamation in the body and when children with Autism feel better they display fewer of the “negative” Autistic behaviors. This is a beautiful and well thought out post. Thank you for sharing.

  10. […] read this wonderful post by Linda Mad Hatter and try to see the world from a different perspective for a […]

  11. Julia says:

    Thank you so much for your blog, your insight and your willingness to share your thoughts. I have two sons on the spectrum, however, one was just recently correctly diagnosed and he is 15. He is really struggling as a teenager and I am at a loss as to how to help him out. He is explosive and I sense it is because he has so many confusing and big emotions he has no idea how to process them or what to do with them. He insists he just has a learning disability and is not on the spectrum like his little brother. I am less concerned about the label, but think if he more clearly understood that his challenges are not his fault, but due to being on the spectrum he may be able to understand why things go so wrong for him. His anxiety has always been a significant challenge for him, but he is learning and applying some good anxiety management strategies.
    I could not agree with you more on every single point.

    • Thanks Julia. I wish I had some kind of awesome wisdom to help with your son, but other than give it time, I’ve got nothing, not knowing him. I do hope that things get better for you both soon.

  12. Wonderful post, Linda. I always try to really take these to heart. Because while Alex hasn’t been formally diagnosed I know he has a lot of quirks that sometimes confuse me. And my biggest breakthrough was just learning how to help him understand things and ME understanding HIM. You’re always enlightening. Thank you. xx

  13. Dawn Harnett says:

    Hi Linda
    Thank you for writing such a wonderful article.
    My Daughter Erin who is 5 years old was diagnosed with Autism in April 2011. We always knew she was different & have no problem accepting that. She is non verbal & we very much believe she will develop in her own time.
    We see every day that she does process information differently to us & muself & my husband are trying to understand her world & help her to understand ours.

    We have never looked for or believed there is a ‘cure’ for Autism but we do try & make the world an easier place for Erin to live & we always try & educate the people around us about Autism.

    Thanks again for such a great Article. Good luck & best wishes to you & your family for the future. Dawn

  14. Well said! Why autistic person can not stay autistic person?! Can we really not accept that? Are we so foolish to think that next and next terapi will cure the Autism ? Thank you Linda for helping me understanding AUTISM and my lovely SON. Agg

  15. Melissa says:

    Fantastic Read…thanks for Sharing…being and Aspie myself…man you really summed it up……i now go thru the same conderscending shit, when dealing with people for my son…..they just do not get it….i think it takes people like yourself..writing blogs like this to open peoples awareness…

  16. […] Why I Refuse To Light It Blue for Autism. […]

  17. […] friends light it up blue.  Why?  Because the whole concept sucks, from start to finish.  I have blogged on this before, and sadly, not much has changed, so today, as we make this meme, and brace ourselves for April, I […]

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Pissed off since 1995. Mad as a hatter since way before that.

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