Another Autism Speaks Post

IMG_2297The other day, while on twitter, someone began to tweet to me about how I needed to boycott Autism Speaks.  I replied that I don’t outwardly support them, nor do I decry them.  That person went on to try to “teach” me about Autism Speaks and how detrimental they were to those on the spectrum.  I replied that I didn’t agree with the way their message is being communicated, but that they have the funding and national recognition to be able to get some much needed research done.  This person then suggested several other autism groups which were much more deserving of my time (didn’t I already explain that I neither support nor boycott Autism Speaks?  What time is it that I am giving to them?) and insisted that these groups also do research.

The following is a list of groups that this person suggested.  I was already familiar with some, in fact already support and follow several on twitter and FaceBook.  There are others on this list that seem a little less organized, and some that I don’t necessarily support.  Not one of them, however, does the type of scientific research that Autism Speaks sponsors.

Let me be plain.  I do not support the notion that autism is a disease.  I do not support the notion that it needs to be cured in any way.  I do not support the notion that autism is a bad thing.  I think Autism Speaks muddies their own message, vision, purpose and intent with some of the inflammatory statements that their founders have made.  For these reasons, I do not raise money for Autism Speaks, nor do I publicly support them in any way, other than to follow them on twitter and FaceBook.  I do share certain articles posted by Autism Speaks that I think are helpful to those on the spectrum, and to families affected by autism.  And I do not “boycott” or publicly denounce them because I feel that the types of research that they sponsor are necessary, and no one else can even come close to the scope of that research.  In short, I think they serve a purpose, but I will not actively support them until they get clear on their message, vision, purpose, and intent.

I respect those with opinions differing from mine until you give me a reason not to.  I don’t enjoy being needled by someone who assumes I have made an uneducated decision.  I don’t enjoy it when someone assumes I support Autism Speaks because I respond to someone else’s tweet to Autism Speaks.

Feel free to check out any of these groups, as suggested by @imwithduke and see what conclusions you come up with.

goldenhatfoundation.org

autismcouncil.org

autismparentingmagazine.com

grasp.org

autismhwy.com

autismnow.org

autism-society.org

autismwomensnetwork.org

autisticadvocacy.org

It never hurts to do your own research and figure out just where you stand.  No nonprofit can serve the needs of all members of the community it purports to serve.  Sometimes you have to take the good with the bad for a time, and see what shakes out.  Do the research, and make an informed decision.  Respect those with differing views until they give you a good reason not to.

 

 

Words Matter: Autism Awareness Day

Today is Autism Awareness Day.  It is a day to celebrate everyone touched by autism, and to increase awareness about autism.  Not “of autism,” but “about autism.”  Increasingly I have seen and heard people in our community dismiss “awareness” in favor of “acceptance”.  I don’t think anyone can argue against acceptance.  But I don’t entirely understand the dismissal of awareness altogether.

If everyone was “aware” of autism, my child’s band director may have been more open to his needs, and may not have decided that he needed to switch instruments or quit band.  If my son’s first social studies teacher of the year was “aware” of autism, she may not have decided on the second day of class that he needed to be in the special ed room instead of her class.  Even I continue to become “aware” of better ways to handle certain situations and behaviors in relation to my son’s autism.  So I don’t think we’re “done” with “awareness,” or that we are ready to “forget” it in favor of acceptance.

I think sometimes we get so wrapped up in our own little community bubble that we think everyone is “aware” but it just isn’t true.  Yes, acceptance is our ultimate goal, but we cannot get there without first helping others to understand the many facets of autism, through awareness campaigns.

People in our community are also upset, saying “Autism doesn’t only ‘happen’ in April,” which is silly.  Do any other communities of those with medical conditions get upset that they have a nationally recognized month which brings awareness to their fundraising efforts?  No one thinks it only happens for a month, but in all reality, it slips out of people’s consciousness after the month is over unless they are touched by autism somehow, and until they experience autism first-hand at a restaurant,  mall or other public venue, or at a get-together in the neighborhood or dinner at a friend’s house.  And then, because of Autism Awareness month, they may remember that what they are seeing may not be a tantrum from a spoiled child, or the bizarre actions of some weird kid.  “Oh yeah, he may have autism,” they may think, and react with compassion instead of condemnation.

Awareness. Acceptance. Awareness Day. Awareness Month.  Words do matter, and another word that is tossed around and shouldn’t be is “epidemic,” which signifies that autism is a disease, which it is not.  The new numbers released by the CDC are interesting, but not worthy of hysteria.  It simply puts an exclamation point on the need for more research, and more services for those with autism of all ages.

So happy Autism Awareness Day and Month.  I hope we reach billions this year, and begin to change hearts and minds which may have been sheltered in ignorance before.  I hope we can work together as a community to see this opportunity for what it is – something still very necessary to reaching our goal of acceptance for those with autism.

Happy teaching.

Pick a color, pick a side

Some autism parents are clearly “against” Autism Speaks. They think raising awareness isn’t enough. They think their executive directors make too much money. They think they diminish the people they claim to help with their language. And they think Autism Speaks should do more to help individual families.

The thing is, Autism Speaks has raised awareness at a national level, much more than a local group could hope to do. And because they take in and disburse so much money, their executives make a hefty salary, but not more than similarly structured nonprofits. And they have funded an incredible amount of research. I do agree that they should drop the word “epidemic”, but I am not going to advise others that they should stop supporting the group entirely.

I have no problem lighting it up blue. I do have a problem with people making others feel bad about supporting the group. If you expect a national group to provide services at a local level, you are expecting a lot. There are lots of local groups that do provide services to families, and you can support this great diversity of nonprofits that help on all levels. You don’t have to pick a side.

Happy National Autism Awareness Day!

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Hey Autism Community: Enough Already!

I am always saddened by the divisive nature of the autism community.  It seems that we parents need to pick sides on plenty of issues, or be ridiculed, or even better “educated” by those who hold differing viewpoints.   For or against vaccines?    Autism Speaks?  Medication?  Jenny McCarthy?  Chelation?  We are even supposed to pick sides on whether the “Trip to Holland” allegory is touching or insulting.

Autism Awareness

Autism Awareness (Photo credit: Wikipedia)

When The Boy was first diagnosed (at age 5), I was handed a brochure, and told to contact the Autism Society of America.  And that was it.  I obviously needed more support than that, and looked to the Internet to join a group in which I could participate to the extent that I wanted to on any given day.  I joined a yahoo group of autism parents, and thought, “This will surely help.”  I couldn’t have been more wrong.  I was confused by all of the differing opinions on things I had never even heard about, and saw actual arguments unfold, in this group of adults whose supposed sole reason for existing was support.  I did not remain a member long.

I think we do our children a great disservice by not recognizing that just like autism is a spectrum disorder, the treatments, causes, documentation, and people attempting to assist us are all a part of a larger spectrum, as well.  There is no one treatment, no one cause, and no one group that can satisfy all of our needs.  If you think that, you are shutting the door to so many other possibilities for your child.

We must trust ourselves to do what is right by our children, as no one knows them as well as we do.  But we must not abuse each other in the process, as no one knows what we go through each day better than another parent of a child with autism.  We must agree to disagree so that we can move forward, creating better treatments, finding causes, and building better organizations for our community.  The divisive nature we have shown thus far is quite possibly holding our cause back, and it will continue to do so, unless we make a change now in how we treat each other.