The Right to Raise Autism Awareness and Acceptance

I would like to share an experience I had and tell you why I think it happened.

April is National Autism Awareness Month so I was wearing an autism awareness bracelet.  As I was waiting in line to check out at my local craft store, the person behind me noticed the bracelet and asked if I had a child with autism.  I laughed and said my “child” is 36 but still has autism.  She started to YELL at me because *my* generation didn’t do enough to “cure” autism and how dare I wear that bracelet because I didn’t do “diddly”–she just wouldn’t stop.  I actually started to cry.  I have been going to this store for over 20 years, including those years I served as a local chapter president of the Autism Society of America, purchasing yards and yards of puzzle ribbon to use for Autism Awareness ribbons.  This was the first time I have been accosted for trying to create awareness for autism and told I had no right to do so, and I was shocked.  The young woman left in a huff, left her items and accused me of not caring enough about my own child to “cure” him.

I had never met or seen this young woman before our encounter.  If she had known me, she would have known my husband writes much about autism for his profession, I have been active in the autism community both as an ASA local chapter president and an advocate and our family does what it can to promote awareness and acceptance.  We have a pretty good life, in spite of having a child with autism.  And yes, my son is not cured.

I would pose this question to you–what happens when you do everything you can–fight, try new “treatments”–and your child is still not cured?  And if your child is not cured, are you supposed to write your kid off, resign from parenthood as a “failure”, and slink away into the sunset?  This is the impression being given to many young parents of children with autism; if they fight the medical establishment, try untested “theories” and are as angry as possible, their child will be “cured”.  If you don’t fight hard enough, your child won’t be cured and it is your fault.  It is almost as bad as the theory of the “refrigerator mother” touted by the late (and wrong) Bruno Bettleheim.   And autism celebrities seem to be telling us bucking the system gives you an “advantage” in finding a “cure” and certainly gives you the panache the media likes to highlight, but what happens when that doesn’t work?

We tried diets, vitamins, drugs, behavior therapies and many other things.  Our son began an early intervention program at 27 months, very early for the 1980s.  Some things helped, such as a form of ABA (applied behavior analysis), sensory integration therapy and intensive speech and language therapy, and some things did not, such as vitamins and diets.  Our Kiddo is better in many ways than we thought he would be, is nonverbal, uses American Sign Language and tests in the mentally challenged range, eventho we know he is much smarter.  He is certainly not “cured” in a real sense, but is able to function in many situations; however, he will never be able to live independently. At 36, he still is learning something new every day and is proud of himself when he does.  I suppose, since I accept my son for who he is and what he needs right now, my views are different from those with younger children.  This doesn’t mean I have given up or I am happy I have a child with a disability.

We fought, as many did in our generation, to get services in the public schools and in 1991, autism was officially “allowed” as a disability to be put on IEPs (individual educational program) to qualify for those services.  We are still fighting in our state to get quality services for adults with disabilities.

The young woman I encountered was not the first person to deride me for not “curing” my son.  As a local ASA chapter president, I did not bring my son to chapter meetings, simply because I wanted to focus on the meeting and not on him.  On one occasion, I had to bring him early to set up before our meeting because my other sons had events at their high school and my husband was seeing patients (he’s a physician in private practice)later than usual.  He would be able to swing by to pick him up before my meeting started.  Our Kiddo helped me set up the meeting room by arranging the table, bringing the chairs, and setting out the snacks.  He wore his lately acquired letter jacket and was very proud of it–what better place for him to try out the social skills we worked so hard on, right?  Wrong, apparently.  A young couple who were attending our chapter meeting for the second time were offended I brought a MONSTER–my son–as he was not cured and told me so, in front of my son and other chapter leaders.  The young couple told me I had no right to be president since I was a “failure” and by bringing him, I was not encouraging them or giving them “hope.”  They wanted me to lock him up and not bring him out in public.  When my husband came to pick up Kiddo, I was shaking–and my friends were horrified.  I soon resigned, after my commitments to chair a fund raiser, simply because I didn’t feel I should be berated by parents who have not walked a mile in my shoes with no concept of what was to come and no desire to.

How about another view of autism?  After doing everything you can, you have to accept whatever happens at the end.  It may not be a complete cure and you have to come to grips with that.  With 20/20 hindsight, it is easy to tell young parents to try everything but keep in the back of your mind, it may not work–and you have to be okay with that.  It is not so bad, but it is different.  We bring Our Kiddo out in the community as much as possible since he is not a “failure” as those young parents felt him to be, but a “success” of the spirit–his and ours.  We are proud of the things he CAN do and focus on those things, rather than what he CANNOT do.  My husband and I feel we have a good life, an intact marriage, three great sons and are happy, for the most part.  Our two other sons are wonderful, bright, talented young men and love their brother but it is tough.  We wish Our Kiddo did not have autism, but he does.  This is NOT the life we signed up for when we decided to have children, but it is the life we have.  Our family’s mantra is “when God gives you lemons, make lemonade–or an Old Fashioned”.  It takes time to get to that place, and no one expects parents with newly diagnosed children to come to this quickly, but it is a healthy option.  I believe it was Abraham Lincoln who said, “People are just as happy as they make up their minds to be”.  We have made up our minds to be happy and Our Kiddo takes the lead as the happiest.

Every month is Autism Awareness Month at our house!

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autismcuppa

Your Autism Cuppa is written by a longtime Autism Mom. A former Autism Society of America local chapter president, she is an educator and artist and has done inclusion consulting work for over 20 years. Married for 36 years to the father of her Three Sons, the eldest having autism, she wants young parents to know they are not alone. Life can be fun!

11 thoughts on “The Right to Raise Autism Awareness and Acceptance”

  1. It blows my mind how unbearably horrible people can be. When things like that happen I try to imagine what could possibly be hurting them so much that they would lash out at another person in that way, but that tactic only helps out a little. I’m glad you shared these stories – they serve as a reminder to me to always consider what another person might be living with and to only ever approach with empathy and caring.

    Liked by 1 person

    1. My Grandma always told me to treat people with kindness, no matter what. She said no one know what they are going through, so assume the best. Wish other people were raised that way. Thanks for the kind comments!

      Liked by 1 person

  2. Shame on that young woman for berating you for the wonderful job you’ve done! I believe our kids are just wired differently–there’s no ‘cure’ for that. (My ‘kid’ is 26…) I think we work–as you clearly have, all your life,–to create the niches where they can be productive, happy, and appreciated–in a society that only reluctantly tolerates their differences, even when those differences bring gifts and strengths. Thanks for all you’ve done to promote awareness in a time when it’s sorely needed.

    Another blogger shared a recommendation of Neurotribes, by Steve Silberman–have you read it? Interesting discussion of the damage done by Bruno Bettelheim there!

    Liked by 1 person

    1. Not heard of Neurotribes (will have to see if I can put it on my Kindle) but met the author of the The Creation of Dr. B. When Hubby was in training, we could have lived in Hyde Park but I didn’t want to breath the same AIR as Bettelheim!

      It’s been an odd weekend…just wanted to pick up silk flowers at Michaels!

      Thanks for your comments.

      Liked by 1 person

  3. My heart aches for you. I think it’s important to make people aware of ‘alternative’ options such as diet and vitamins, because some kids do get much better on them. For some of us, our kids do not see miraculous improvements with most things, but that doesn’t mean we don’t do everything we can to help them overcome their challenges. That doesn’t give anybody the right to deride another’s decisions for their child however, let alone make unfounded assumptions about someone they don’t even know. I suspect those parents you mentioned above have a few ‘issues’ of their own… {hugs}

    Liked by 1 person

    1. It was 2000 when those parents in my ASA meeting made their comments to me and (whether they realized it or not) to Kiddo. I have to wonder about what shape their very involved autistic child is in……he would about 17/18 years old now.

      I do agree with you…try everything that makes sense to you….if it works, it works…if it doesn’t, it doesn’t. And you have to understand that and be okay with it. We all feel guilty for the autism, it makes no sense to feel guilty because you feel you haven’t tried everything to help your child!

      Liked by 1 person

  4. Those with newly diagnosed children tend to be the ones lashing out. They need someone to blame. I have experienced this twice…this weekend, and the first time in 2000 (see my reply to AutismWithChocolate)…in fact, that couple actually called the state society’s executive director to complain about me. Arlene and I were friends and she called me and we laughed about their cluelessness and that’s when I told her I was going to *retire* after the national fundraiser I was co-chairing (with her) for our state’s contribution. After speaking with them, she understood…they were nasty to her when she wouldn’t fire me…and this is a wholly not-for-profit organization run by volunteers and I was elected….it was no skin off my butt to resign AT ALL. As I mentioned before, their son would be the same age as Kiddo was when they had their temper tantrum. Wonder how he’s doing………

    Liked by 1 person

  5. I am disgusted. I’m glad I wasn’t in that same line within earshot.

    I get emails from people about what I should do, not do etc. Just got a text moments ago from a friend who sent an educational set of DVDs with the assurance that my child will be a genius like the other child she gifted the same set to. Ah the magic cure for developmental delays! And when I responded with no I haven’t, I am judged for not doing all I can. She sent a reminder about the genius child. My daughter won’t sit still to eat let alone watch a DVD! Sorry rant over. Just saying, the judging and accusations never stop.

    The work you have done to raise awareness is important to me and many others. I am grateful for every word you have written and continue to gain knowledge and strength from your experience.

    Liked by 1 person

    1. I have to tell you…..the judging and accusations have just begun for you. I wish I didn’t have to say that but…….I want you to understand that you have only *just begun*. I love you, Bumbi’s Mom, but this won’t be the first time someone will send you a DVD…or something equally screwy….and tell you it will fix your child. Sigh. Take the DVDs and don’t engage in conversations with clueless people. You’ll be happier and mentally healthier. It’s hard, very hard, not to take the bait. Say *thank you*, say *how thoughtful*, say *you shouldn’t have!* but don’t try to explain yourself. Sell the DVDs at your next garage sale and if asked if they turned your daughter into a genius (what? are they really that ridiculous?), just tell them they didn’t work for Bumbi……and change the damn subject!

      We all grow a (somewhat) thicker skin but, as I noted in this blog post, sometimes somebody’s a)ignorance, b)arrogance, c)rudeness and d)cluelessness will catch you off guard. I go along in this world forgetting there are plenty of angry, unhappy people who do not edit their comments. They will walk in my shoes someday, and I wonder how they will handle it.

      Thank you….I still try to raise awareness because there are STILL many people not understanding Our Kids …..you’ll take over for me someday!

      Liked by 1 person

      1. I am so grateful for your honesty and wisdom! You are so right about not engaging in these ridiculous conversations.

        And I took your advice on the genius making DVDs. 🙂

        Liked by 1 person

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