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.