The following statements are from personal experience and reasoning. I have Asperger’s Syndrome and am considered High Functioning by most standards. So, I can only speak for myself as the information applies to other High Functioning individuals. I do not have a frame of reference, nor do I claim to speak for those with greater impairments than I. I do, however, feel that my understanding of the underlying mechanisms of Autistic Spectrum behavior do carry through logically and should be considered to have at least a modicum of validity.
To cure; or not to cure? That really is THE question.
As autism awareness grows, this question becomes more electrifying by the day. Groups like Autism Speaks are out there and they have been pushing for a cure to autism. Many parents are thrilled by the possibility.
There are several issues at work here – not the least of which is that Autism Speaks, as a group, is upsetting to most Autistic Spectrum individuals. There are numerous reasons why, and Autism Speaks just doesn’t seem to get it. The following reasons are my OPINION and NOT presented as fact.
- Let’s start by looking at the big one… Autism Speaks has used legal threats to silence Autistic Spectrum individuals who have spoken out against the group. I don’t really know why they react like this, but it seems to be counter to their stated purpose – to represent Autistic Spectrum individuals to the world. Bullying is something that Autistic Spectrum individuals deal with at different points in their lives and the irony of an Autism advocacy group that engages in that very behavior seems lost upon them. Here are two examples: Autism Speaks threatens 14 year old for parody site – and – Autism speaks threatens illegal action against Autism Spectrum individual who makes a t-shirt speaking out against them. It just doesn’t sit well with most of us.
- There is no accountability for money to Autism Speaks. They have no transparency in their book keeping. Unlike most similar charities and advocacy groups (not just for autism), Autism Speaks does not reveal what they are doing with the money. This would not be an issue if it wasn’t clear that they use a lot of it to bully Autistic Spectrum individuals as above.
- It is hard for us to believe that Autism Speaks truly speaks for us. Autism Speaks produced a movie called “Autism Every Day.” In this movie, one of the BOARD members of Autism Speaks states that she considered driving off a bridge with her Autistic Spectrum daughter in it and the only reason she doesn’t is her other daughter. She contemplated MURDER-SUICIDE because her daughter was Autistic… Don’t believe me? Here’s a link to the clip – Watch it on youtube. I hope you can see how this can be damaging to their reputation.
- Autism speaks has routinely portrayed autism in a terribly negative light. They have used words like “disaster”, “epidemic”, and “hopeless”. This negative portrayal of Autistic Spectrum individuals has caused a great many people difficulty in social situations. I, myself, have experienced this blowback. On their website (at least in the past, I have not looked recently.) Autism Speaks compared the rise in documented cases of Autistic Spectrum Disorders to cancer and HIV… This is offensive because these are conditions that, left untreated, will result in death. No one, to date, has died from an untreated case of Autism.
- Autism Speaks tries to portray itself as THE authority on autism. They claim to “Speak for Autism.” Yet their advertisements and information are fear based propaganda that focus on the negative impact that autism has on families, portraying us all as nightmares to be around. As many family and friends of Autistic Spectrum individuals can attest, this is not the case. There are challenges, but we are not a nightmare to be endured.
- The financial expenditures they have revealed show a great deal on possible treatments and cures, but very little on what they refer to as “Family Services.” Cognitive behavioral therapy and developing coping skills and mechanisms that are necessary for proper functioning in Neurotypical society. Almost all mental health professionals agree that these are the most effective treatment plans and options… and this is what Autism Speaks refers to as “Family Services.”
- Lastly, and this is the biggest sticking point for me is that Autism Speaks does not have one Autistic Spectrum individual on their board. They are claiming to speak for Autism without the voice of one of us. How can you make decisions for an entire (STATISTICALLY SIGNIFICANT) portion of the population without one of us there to advise?
Contrary to what I have written thus far, this is not an entry speaking out against Autism Speaks. Autism Speaks just happens to be the largest Autism cure advocacy on the planet. They push for prenatal testing and prevention as well as a bio-medical cure.
When reading their materials, it is unclear what they intend with the concept of autism prevention. However, considering it is almost always listed in conjunction with pre-natal testing, one can draw a logical conclusion. They may mean to introduce a retrovirus, in vitro, to rewrite the DNA of the unborn child, but considering that this technology is many years or even decades off… This is unlikely. I have read a lot of their materials… And, honestly, it feels a lot like eugenics reminiscent of 1940s Germany.
They push for a cure when we don’t even know what causes Autistic Spectrum Disorders.
However… Let’s say that we have a cure. We live in an age where we can rewrite DNA with a machine or a retrovirus or something else equally science fiction-like. This is possible in the future, but not today… but this is a hypothetical situation.
Having this technology means that children diagnosed with Autistic Spectrum disorders in the womb could be cured before birth. The upshot of this is that they would have none of the developmental issues that come with Autism and be able to lead perfectly normal – Neurotypical – lives. I am all for this.
Well, mostly. Procedures like this are guaranteed to be prohibitively expensive. DNA tests cost $500-$600 a piece. To create a cure like this, a full DNA work up has to be done. Then the offending genetic code has to be identified. Then a custom DNA strand has to be built. After that, the DNA strand will have to be introduced into a viral medium. This virus would then be cultured and introduced into the host body where they will inject the new DNA strand into the cells of the body.
If it sounds like something out of science fiction… that is because it is. Like many devices we use today, what was once science fiction is now science fact. (Cell phones, iPads, credit cards, travel to the moon). We are standing at a precipice of ability and discovery… which is to say, this technology is within view, if not reach.
As with many other procedures, since Autism is not a life threatening condition, it will most likely be considered a voluntary procedure and will not be covered by insurance. As such, this cure will not be available to any but the rich. I’m not going to debate the ethics of this as that is not the point of this essay, and you probably do not want to experience the invective that this topic would invoke.
So… Let’s make another assumption… it is inexpensive, easy to produce and available to everyone. I am all for it. That means no children would have to go through the difficulties I did when growing up. That would be absolutely awesome an I am all for it.
But what about the adults? What about those that have learned to live with Autistic Spectrum disorders. Simply put, even if we received a cure – something that fixed the underlying mechanisms of our Autistic Spectrum Disorder, it would do us little good.
According to studies, a child’s mind formed incredibly early. One study actually states that personality is codified as early as 3 years of age. (study located here) However, by the time Autistic Spectrum individuals reach a level of intellectual maturity, we have conditioned ourselves into a specific set of behaviors.
This is to say that, if someone cured my Asperger’s Syndrome today… I would behave largely like I do today. I would pick up on social cues and be a bit more comfortable in social situations, but I would still be outspoken, brutally honest, intolerant of being touched without permission, hate phones, hate loud noises and crowds. These behaviors have been trained into me… they are learned behaviors that I have practiced and struggled with. They are now habit and inherent to my personality.
Additionally, I do not believe a cure for Autistic Spectrum Disorders would result in a cure for the comorbid conditions so many Autistic Spectrum individuals suffer from along with their Autism. That means that, regardless of Autism, many Autistic Spectrum individuals are still pretty messed up people.
Also, MANY people on the spectrum do not consider themselves to have any problems. They view their Autism as a difference… not a problem. Some even consider it a gift. These people, due to the stress and anxiety associated with a major paradigm shift like this would be terribly resistant to anything of the kind.
Personally… I wouldn’t do it. While my Asperger’s Syndrome has caused my a lot of pain over the years. I would not trade it for anything. I have learned how to cope and am functional. I have my art and interests… and I have my habits. I wouldn’t want to have to learn all these things over… And… well… my pain makes me who I am – a compassionate and thoughtful person concerned with the thoughts and feelings of others.
So… To cure or not to cure… the unborn, definitely… but the rest of us… well… it should be considered on an individual basis. Each Autistic Spectrum individual would need to make their own decisions.
Images in this issue SHAMELESSLY stolen from the following sources:
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