Changing your autism mindset

by Marpessa Kupendua

Malcolm, 19, Marcus, 21, and Hannibal, 19, are the older sons of Marpessa Kupendua and her husband. They also have a younger son, Diop, 16, and a daughter, Ameerah, 26.Experiencing this enlightened age of “autism” is remarkable after having parented three autistic boys over the past 21 years. During the early 1990s when this diagnosis was said to have been applied in only one out of 10,000 births, it was common for me to defend my highly animated sons to curious people by carefully explaining that they are au-tis-tic – “Did you say ‘artistic’?” – while handing them info cards from the Autism Society.

Now that autism spectrum diagnoses are estimated in one out of 100 births, [1] all I need do is mention the word and many nod knowingly, yet physically recoil. What has the increased publicity caused them to think they understand? Stating that there has been a failure to communicate is putting it mildly!

During the contestant interview segment on the Oct. 14 Jeopardy! game show, Alex Trebek approached champion Terry Linwood with, “Your son has an affliction. He’s autistic.” Quite a somber word choice given that Merriam-Webster describes an affliction as causing persistent pain, distress and great suffering.

Even the knowledgeable and worldly Alex fumbled during this briefest of talks to this parent about his child, ending by grimly expressing that he hoped a cure was found “for your sake.” Such an eerie foreboding, usually reserved for sentiments which end with “sorry for your loss.” It’s safe to say that this particular question just didn’t fit into a neatly packaged category selection.

It seems that nowadays most folks either don’t want to appear not to know about autism, don’t really care to know, or have seen enough bits of newsbriefs to think that they know. Unfortunately, leaving people to their own ideas has proven to lead to extremely distorted conclusions, such as the repugnant comments made by comic Denis Leary, who wrote: “There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumbass kids can’t compete academically … yer kid is just stupid. Or lazy. Or both.” [2]

Leary apologetically explained later that his remarks were taken out of context – although they appeared in his own book. I appreciate knowing what’s running around in people’s heads as they relegate my sons to that portion of their minds inhabited by short bus jokes, even as it sickens me.

Celebrities such as Dan Marino, Holly Robinson Peete, Jenny McCarthy and most recently Toni Braxton have gone public with their children’s autism diagnoses, each primed to make this a cause that others will get behind. Problem is that people still don’t quite know what that cause is, let alone what getting behind it truly entails, no matter how visible these notables may be. Having seen “Rain Man” does not equate understanding, and even the advent of googling doesn’t seem to compete with what the imaginations of many can convince them is knowledge.

The Centers for Disease Control definition of an autistic is a person who may have significant language delays, social and communication challenges, unusual behaviors and interests, and may also have intellectual disability. [3] But we parents would love to discuss what that doesn’t tell you, which is that our lives include hilarious, amazing and ingenious moments of wonderment, even spirituality and tenderness.

The CDC also probably can’t report that most parents of autistics yearn to crawl inside our children’s heads so that we can “get it” and fully understand their every nuance – a decidedly non-IEP (Individualized Education Plan) objective. [4] Quiet as it’s kept, some of us, perhaps even most of us, believe that at some point in the future our children will at long last pass that mysterious milestone that has kept our worlds disconnected … and we really don’t want anyone, professional or otherwise, to tell us differently, regardless of our children’s age, the severity, the statistics or evaluation scores.

Don’t speak about our children in hushed tones with downcast eyes or, even worse, avoid our presence altogether. We – and more importantly our children – need you in our lives to keep us all connected! We too often feel ostracized, rejected and fearful of your reactions to our children and would just like to feel supported in whatever manner you are able.

It’s frightening to think that if we become hospitalized or otherwise unable to care for our children that many of us have no one we could call on to help out with even the most basic of our household’s needs. Don’t worry about interacting with our children; get over your discomfort and come to see us. Give us a call before you come so we can get ready for company.

Greet and talk with our children like you do anyone else; just don’t pressure them for a response. If their behavior becomes difficult to control, don’t advise us on how to discipline our children – any more than you would want someone to do that with you and your child. It’s OK if you can only deal with our children in small doses, but don’t just disappear altogether. It seems to us that you no longer care when you do and you demonstrate to your own children that autistics are to be shunned as the “others.”

There is also plenty that you can offer us in very practical ways. For example, most of us could use replacement furniture on a very regular basis as many of our children do a lot of rocking, banging, bouncing and jumping and are otherwise unkind to even the sturdiest of pieces. Before you throw away that next item, try throwing it our way first.

We also need help with handiwork, as in patching holes in the walls, securing safe spaces and numerous other small jobs that are a lot for our families to keep up with. Any way that you could offer to assist us would be appreciated; just ask what we need and you may be surprised at how greatly you could positively impact our lives.

Our children would also enjoy an outing with enough supervision of participants who understand their abilities. Many of us have non-autistic children as well and want as much inclusion of all of our children as possible.

Although there are autism “Walks” and lots of talk of a “Cure,” there is no potentially fatal disease process involved. As well meaning as you may be and as important as those activities are, we really don’t want you to talk to us about curing our children whenever we meet.

You represent society at large to us – bus drivers, bank tellers, grocery clerks – and you just may be someone we hope will have our children’s backs in a myriad of ways when they need it the most. You and your children must know that we want our sons not to be discriminated against, abused or taken advantage of and to live as fully and happily within our communities as possible. Sound familiar?

Each of my three very unique individuals won’t have identical futures and, unlike other parents, we’re not daydreaming of packing them off and retiring away peacefully when they reach adulthood. We’re taking it one day at a time – sometimes even one moment at a time – but never, ever counting them out. We’d appreciate it if you’d do the same.

Footnotes

[1] http://www.theatlantic.com/doc/200910u/autism-diagnoses

[2] http://www.ageofautism.com/2009/08/first-michael-savage-then-denis-leary-now-rex-reed.html

[3] http://www.cdc.gov/ncbddd/autism/facts.html

[4] Wikipedia: In the United States, an Individualized Education Plan, commonly referred to as an IEP, is mandated by the Individuals with Disabilities Education Act (IDEA). In Canada and the United Kingdom, an equivalent document is called an Individual Education Plan.

Marpessa Kupendua is a married mother of five, grandmother of four, political and human rights activist. She can be reached at nattyreb@gmail.com.