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!

What do you and I deserve?

I’ve had a yucky day.  It’s Thursday and my *swing day* (depending on the week– a meeting for work, teaching a class, or today’s activity, chores and errands.) and today I did the week’s marketing.

We live in a very nice suburb of a large Midwestern city.  Our village is a bedroom community, with everyone knowing each other and their kids. You never know who you will run into at the local grocery store and today I saw a friend.  Or I had thought she was a friend.

Judy (not her name) is the Mom of one of The Youngest’s best friends from grade school. Her son was probably my favorite of all of The Youngest’s grade school buddys. He was a lovely boy, well mannered and as sweet as sweet can be.  He was always nice and tolerant of Our Kiddo, often a way we separated the wheat from the chaff with The  Middle Boy’s and The Youngest’s friends. But he was always a bit, well, slow.  We found out, just before Jr. High graduation, he had severe dyslexia and would be attending a boarding school in Vermont for kids like him.  He did well, attended a junior college connected with the boarding school, then came home and applied to four year colleges.  He did NOT do well and is now a manager of a body shop, something his physician mother and physician father are not happy about.

Anyway, getting back to today. When I saw Judy, I waved and smiled. At first, she seemed to ignore me but then guided her grocery chart next to mine….and let me have it!  She said everything came easily with my kids and how dare I and…….I didn’t deserve kids like The Middle Boy and The Youngest because  I never worked for it and hadn’t been as involved as she thought I should be…blah, blah, blah.  It was shocking, since she knows our oldest son has severe autism, is non-verbal and still lives at home (with our state, we may have to DIE before there’s a place for him in any group home).

Judy also doesn’t know The Youngest has a chronic illness, diagnosed his senior year of high school. He almost died twice and we finally had to pull him out of school the last semester to finish with tutors.  He dictated his college application essays to me from his hospital bed because we felt if he did pull through, he should be able to go to college as he planned.  It sucked but he is doing okay-ish now.  He’s pissed he has this illness and pissed he will have to take medication for the rest of his life and pissed he has to deal with the whole thing. He was able to go to college and grad school and is home now (if truth be told) because we thought he should have some TLC while he worked before going back to school and maybe get his treatment tweaked a bit.  This ain’t been easy, folks.

But Judy explosion at the grocery store got me to thinking…what do any of us deserve?  We have children–by birth or adoption or ?, doesn’t matter–but we are not promised perfect children.  We are not promised an easy time or smooth sailing or any other cliche you can think of.  We are promised a child, imperfect or not, to love.  And we love them and do the best we can.

We don’t know what anyone else has to go through with their children.  They may appear *perfect* but have hidden challenges we don’t have any right to know about.  It’s not our place to judge those who seem better off than we or whose kid is doing *better* with the same autism treatment as ours. We all deserve good things and sometimes we get them and sometime we don’t.

I let Judy yell for a bit and then, since I didn’t want to make a scene in front of the cantaloupes, gave her the Finger (yeah, I did….I couldn’t help it!) and got my grocery cart the heck outta there.  I headed to the opposite side of the store to shop and finish what I needed to do.  The Kiddo had to be picked up from his Day Program after I did the grocery shopping  and only had a certain amount of time to get this done today……yep, just livin’ the life of luxury with my adult developmentally disabled son…..where are my bonbons?

Maybe I’m wrong, but what I don’t deserve is being yelled at in public!