Monday, January 2, 2017

I'm Angry

I'm angry.  And when I'm angry I don't pull punches.  

Autism Speaks placed an article on Facebook which was actually a post from a blogger who is the Mom of an autistic child.  It addressed the difficult issue of placing her child in a home and knowing that it was a matter of "when" and not "if".  The blog was beautifully written and beautifully honest.  

And then Autism Speaks fails miserably.  How?  It allowed comments to be placed uncontested below the article.  Many people commented how they identified with this Mother, and how they too have to face the same inevitability.  But other comments where much more negative.  Terms such as "I would never abandon my child" and "I will keep my child with me as long as I am breathing" were far too common.  Some went so far as to shame parents who have made that choice.

Hold on Tomyou might say, you preach that we should be free with our feelings!  And that is 100% true.  BUT....Autism Speaks has an obligation to dispel the very myths which could discourage a family from seeking the help that they need.  They should have (if they were to allow comments) provided counterpoints to those who have a closed mind to group homes.  They should have encouraged proper research and resources to make an informed decision.  Of course group homes are not the answer for everyone, but to allow people free license to "shame" parents who feel it is the right option for them is to ignore their responsibility to people with autism.  

I've let Autism Speaks know that I feel that they were irresponsible in their actions.  I told them that they pledge on one hand to devote themselves to families with autism and on the other hand allowed comments saying that people who place their children in homes are "abandoning" them.  I found myself commenting to these individuals that with the right amount research a good group home is attainable.  I commented that to "abandon" your child is to yourself die and have no secure future for your child.  

I'm angry because it shouldn't be my responsibility to speak up for Autism Speaks.  Isn't that half of their name: S-P-E-A-K-S???   Ugh.

The truth is group homes are a mixed bag.  Some are great, some are good, and some are just not hitting the mark.  There is NO absolute answer.  Anyone who tries to convince someone either way is doing that person a disservice.  BUT, they are worth a tremendous amount of research.  Your case manager can help you to navigate the decision to find out what is best for your individual case.  If anyone is taking the advice of people posting on the internet, they haven't done their own homework.

Autism is winning the war with our children.  Let me say that again:  Autism is winning the war with our children.  Until we get ANGRY and start pushing back it will continue to gain ground.  The enemy comes in many forms:  lack of dollars, lack of understanding, lack of research.  If Autism Speaks or anyone else needs to have the backbone to call BS on someone who spreads false or damaging information, then so be it.  If they want to get angry with me for calling them out, so be it with that too.

The only thing I can imagine that is worse than not fighting back.

Be well and God bless.   Tom

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