Thursday, April 2, 2015

Autism Acceptance Month (it's more than Awareness!)

April is Autism Awareness Month, and today (April 2nd) is Autism Awareness Day. But I would like to think of it as Autism Acceptance Month. Awareness alone isn't going to do much good for the autism community!

Share this photo if you support Autism Acceptance!

Don't get me wrong, I still think that awareness is important. If you are not familiar with autism, here is some information on it:

Autism Summary

"Autism is a complex neurobehavioral disorder that includes impairments in social interaction and developmental language and communication skills combined with rigid, repetitive behaviors. The disorder covers a large spectrum of symptoms, skills, and levels of impairment. It ranges in severity from a handicap that somewhat limits an otherwise normal life to a devastating disability that may require institutional care.

Children with autism have trouble communicating. They have trouble understanding what other people think and feel. This makes it very hard for them to express themselves either with words or through gestures, facial expressions, and touch.

A child with autism who is very sensitive may be greatly troubled -- sometimes even pained -- by sounds, touches, smells, or sights that seem normal to others."

Now that you have awareness of autism, what will you do about it? Will you accept or reject it? What if you had a child born with autism?

It's up to you to decide your own view on it; I'm only here to share my own experience and findings. I should point out that as an extremely introspective autistic person who carefully researches and aims for objectivity, I know a good deal about this topic. All I ask is that you keep an open mind to the information, insight, and speculations I'm about to present to you. 

You can't cure autism
Autism Speaks is hosting a worldwide event called Light It Up Blue, to "shed light" on autism. However, I will not be supporting this, because I do not support Autism Speaks (keep reading to find out why).

Certain organizations like Autism Speaks view autism as a disease that needs to be cured. They even state this on their website: "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." They do mention that they advocate for the needs of families and individuals affected by autism, but a mere 4% of their funds are for family services. Rather, the largest portion of their funding (44%) is for finding a cure through genetic research. For years (and to no avail), they have been searching for the genes associated with autism, so they can attempt to alter them in the future to induce "normal" brain development in those at risk. Many of my fellow aspies/auties would agree that an ethical problem, because genetic engineering can be more dangerous than helpful. I don't think it's wise to tamper with genes and DNA unless you're willing to risk destroying the organism you're trying to alter (in this case, a person!).

     1. Salaries $18,484,028
     2. Science Grants $15,790,797
     3. Supplies and Equipment $3,332,651
     4. Benefits $2,989,492
     5. Professional Services $2,877,697
     6. Advertising $2,212,520
     7. Family Services $2,048,552

Source: Autism Parenting Magazine

Here's a great video from Amythest Schaber, an autistic self-advocate, as she discusses the issues regarding Autism Speaks.

Deanne Shoyer, mother of two boys on the spectrum, uses an excellent comparison in her article: 
"If there was an organization called “Femininity Speaks”, led and staffed by men whose goal was to prevent, treat and cure femaleness, would you be comfortable with that?"

Autism is a brain type, NOT a disease.
From the perspective of the neurodiverse community, autism is a different type of brain development, not a disease.
Autism means your brain is wired differently, so it develops differently. You can't cure a brain type without eliminating it completely, which is essentially wiping autistic people off the face of the earth. Hypothetically, let's just say that a cure via genetic alteration is safe and effective. Would you choose to cure your unborn child to make them normal if the "autism gene" was found during prenatal screening? What if they could have been born with only a mild form of autism, and could have made crucial contributions to society like Bill Gates? Can you imagine the world without computers?
The curist view of autism is similar to how society used to view homosexuality as a disease to be cured, and now it's accepted as a legitimate sexual orientation. It's also like trying to "cure" someone's personality just because it's different than yours. If you were an extrovert, would you try to rid the world of introverts? Just like an introvert may be perfectly content being introverted, many spectrumites don't want to change who they are.

Trying to make an autistic person normal is like trying to turn a middle-eastern person an Icelandic Eskimo. You can dress them up for the part and teach them how to act, but they'll always be inherently middle-eastern.

This Eskimo lady finds your efforts amusing.
I don't understand why society feels the need to force autistic people into a box of normality when some of their behaviors (like stimming) are necessary for them to feel comfortable. Stimming is not a harmful, and anything that can be viewed as a personality trait (i.e. being reserved, peculiar, picky, focused, etc.) should not be "cured." And things like not understanding sarcasm, hating small talk, not wanting to socialize much... these are considered personality traits in NT's! Even if what autistics do is a little weird, hey, that's their decision and freedom. It's their life, their choice, and if it doesn't hurt anyone, why change it?
No one should have to change themselves just because others don't like it. Acting "normal" is a struggle for many people, especially those who are different, like autistics. I discuss this issue in my video on "normality."

Of course, there are some on the spectrum who exhibit harmful behaviors like aggression, 
self-injurious behaviors, etc. and I would certainly want to prevent those behaviors that are dangerous to the autistic person also/or people around them. But eradicating the autism won't solve anything--that's like saying murdering a depressed person is a solution to their depression. I would seek to understand what lies beneath destructive behaviors so I can try to address any underlying needs that may be causing it.

As for any harmless quirky behaviors like stimming, talking to oneself, obsessing over hobbies, etc. I don't see a need to shun them if they are helpful or expressive of the individual. The point is, attempting to cure this brain type for the sake of 
convenience is not as practical as treating the more unpleasant features of it.

Cure vs. Treatment
In the context of this post, there is a difference between how I define “cure” and “treatment.”

To clarify, the cure that I disagree with involves genetic tampering and/or aborting a child who may have the “autism gene,” as Autism Speaks seems to support. I do, however, support and encourage treatments for autism. While autism is not a disease, many individuals on the spectrum still need/benefit from treatments and therapies. Early intervention programs are crucial—especially for lower-functioning individuals—to improve a child’s development. I also highly recommend therapies according to the individual’s needs and preferences. For instance, I know a handful of aspies who are provided with pet therapy, and I can see how being around animals like horses and dogs helps them function better by calming them. Other services that are crucial to autistic individuals as they get older include social security benefits, job coaching, and transition programs like S.A.I.L. (Students Attaining Independent Living). I am in college now after being in the S.A.I.L. program for two years, and I doubt I’d have been able to handle life as well as I do without the life skills I have learned from it.

One major barrier from attaining services is the cost. Immense financial burdens are a common problem for families with autism, as these services can be expensive. There is definitely an issue with the government's financial priorities in many states and a severe lack of funding for programs and therapies. A family should not have to pay steep amounts (an average of $60,000 per year!) out of their own pocket. Non-profit autism organizations should always consider this crucial need in the community while sorting out their financial priorities.

What do you think? Do we need to eliminate autism altogether, or place more emphasis on treatment? Leave a comment below with your thoughts on the issue.


  1. Thanks for providing a relatively moderate view of autism awareness/acceptance. I would like to point out that, by using the term "classic autism", on reference to self-injury, you are dividing the community into those who need a cure and those who don't. I know you don't support a cure for the whole neurological entity that is autism, but if you distinguish "classic autism" from say Asperger's, this is drawing an unnecessary line where pro-cure activists can step in and say "my child has classic autism, you don't so they need a cure and you don't". We need to center the discussion on which autistic traits (that may befall people across the spectrum) need treatment and which need to be accepted. I for one hve an Asperge'rs diagnosis and I exhibit many of the "classic" self-injurious behaviors.

    Btw, for the month of April on my blog, I write a series of posts in alphabetical order on themes relating to autism. This is for the A to Z Blogging Challenge.

    1. I can see that by my wording it may look like I was implying that I'd want a cure for classic autism, but that's not what I was implying at all (I would state it literally if I was). I was saying that I think that the more dangerous behaviors like SIB are indeed problematic, but rather than seek a cure for those reasons, I'd find ways to treat them--specifically by finding out why they happen and try to meet whatever unknown need might be causing it. I have added more in the article to distinguish between what I'm defining as a "cure" vs. "treatment" so no one else gets confused.

      And I apologize for not including SIB as something that can affect anyone on the spectrum... I was aware of it, but I left it out since I tend to get OCD about my words and sentences to avoid ranting. I have edited it to make it applicable to the whole spectrum.

      As for the use of "classic autism," that is simply my preference in wording, since I'm hesitant to use "high-functioning" and "low-functioning" to not offend anyone. I do my best to strive for political correctness...

  2. Trying to cure autism is like trying to turn an android into an iphone.

    1. EXACTLY!! You may as well take us apart and sell the pieces, cuz we can't magically be something we're not.