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Changing your autism mindset

November 16, 2009

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.
Malcolm, 19, Marcus, 21, and Hannibal, 19, are the older sons of Jahfree I and Marpessa Kupendua. 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.

18 thoughts on “Changing your autism mindset

  1. Elise

    This article is very interesting. My husband and I were just having a discussion about how my oldest aspie has to figure out how to deal with people who don’t get him. Unfortunately until there is wider education in the world at large that is how we have to handle things with our son. I really don’t know what I would do if he were more affected by his autism. It just frightens me actually.

    Reply
  2. Elise

    This article is very interesting. My husband and I were just having a discussion about how my oldest aspie has to figure out how to deal with people who don’t get him. Unfortunately until there is wider education in the world at large that is how we have to handle things with our son. I really don’t know what I would do if he were more affected by his autism. It just frightens me actually.

    Reply
  3. moorbey

    This is an outstanding piece of writing about children with autism. I also am the father of 15 year old son whom i describe as special needs for that is the only way for him to be cosideredok by some people

    Reply
  4. Malaika H. Kambon

    18 November 2009

    Good Morning Sis:

    My hat has always been tremendously off to you!!!

    Having the courage to raise 5 children, especially in these times deserves a GOLD medal – much less 4 sons and 1 daughter – with 3 of 4 sons autistic in an unfeeling, insensitive world.

    And to do so and still be able to be strong, humanly aware, and politically active as well is a fete accompli of major significance!

    You have an AFRIKAN FAMILY with particular strengths.

    You are also the first AFRIKAN FAMILY that I know of to speak of the challenges of autism from an AFRIKAN Woman’s/Family’s perspective.

    Years ago, I read a book entitled, ‘Son Rise.’

    It was about a white family who decided that the system was abusing their very special and gifted autistic son – first and foremost by refusing to respect him as special and gifted, instead of categorizing him as a particularly repugnant dis-ease that needed to be committed to an asylum.

    So they undertook the daunting task of educating him totally on their own. It was a very interesting book.

    They have capitalized on what happened to their son.

    A book (Son Rise) was written, institutes were founded (the Autism Treatment Center of America; the Option Institute with its SON RISE Program – 1974) and a movie (Son Rise: A Miracle of Love – 1979) was made based upon the Kaufmans and their son Raun.

    And of course, I saw the movie ‘Rain Man.’

    Millions were made on the production of the movie; from which actor Dustin Hoffman received a Best Actor Oscar in 1989 and the film won 4 Oscars at the 61st Academy Awards (March 1989), including Best Picture, Best Original Screenplay, Best Director, and Best Actor in a leading role for Hoffman. Its crew received an additional four nominations.

    RAINMAN was based upon the life of (then categorized as autistic savant Kim Peeks, whom Wikipedia says is really a megasavant with FG Syndrome, ‘…a rare genetic syndrome linked to the X chromosome which causes physical anomalies such as hypotonia (low muscle tone) and macrocephaly (abnormally large head).[7] http://en.wikipedia.org/wiki/Kim_Peek)

    Kim Peeks has also vastly benefited from the publicity and popularity of the movie, and has received specialized treatment from as varied a range of sources as his father to NASA.

    I’m do not know how many – if any – AFRIKAN Families have benefited from either of these.

    One can only hope; however I find myself wishing that the papyri of IMHOTEP were not destroyed to the point that any fore knowledge of autism could be studied and built into a library that would benefit people of color.

    Also, there probably aren’t many people who know that RAINMAN is actually an acronym as well as the title of a movie about an autistic adult male who stands to inherit millions of dollars; who neither knows nor cares about this; nor will he ever; who manages to sensitize his completely insensitive brother just by being who he is…

    RAINMAN is the acronym for
    Remote Automated Information Manager (AOL)

    and for

    Reliability and Maintainability Analysis and Information Management (IBM distributed workflow)

    Both of these are computer coding functions.
    http://encyclopedia.thefreedictionary.com/RAINMAN

    One wonders, of course if Holly – weird knew this when they made the movie. I do not recall this being mentioned when the movie came out in 1988.

    What else can I say Sis but thank you for writing the article, ‘Changing Your Autism Mindset.’

    Perhaps this will serve as a beacon to those who may desperately need one – as well as recognizing others, such as yourself and your family, who are already beacons of hope in a vast sea of the unenlightened.

    War Without Terms,
    m

    Reply
  5. Fatirah Aziz

    Peace sis Marpessa!

    Once again, you’ve exceeded the boundaries of my admiration for you. First let me say, those are three handsome young men. You’ve really made clear some things that folks may not have known ~ or thought they did, but didn’t. I pray for your continued strength and perseverance. That you’ve raised your children, along with all that you do in the human rights/acivist arena is really something to think about. I also think you are a wonderful writer; your humor is very on-point. :-)
    I hope many many folks read this wonderful, warm and enlightening article!
    love u
    fatirah

    Reply
  6. Sis. Marpessa

    Peace everyone,

    Thanks so very much to all who responded, the info, video, & thoughts you’ve shared enrich the article greatly. If not for my phenomenal husband, Bro. Jahfree I, there would be no way for our family to be intact. Many families of special needs children experience divorce and other types of dysfunction due to the stress. It’s my hope that readers are inspired to pass this on and perhaps even reach out to these families, particularly those parents struggling to raise an autistic child(ren) alone. Many thanks to the SF Bay View!

    Reply
  7. Leroy F. Moore

    Thank you so much!! As a Black proud disabled man, I’m so excited to see and read this story in a Black Newspaper. Its about time our Black disabled and Black community, media and activists come together. This has be my journey for more than twenty years. We must meet! This world has set our people apart especially Black disabled people! Lets come together and break bread.

    Thank you.

    Leroy Moore
    Black Disabled and proud!

    Reply
  8. Sis. Marpessa

    Peace, Leroy, i'm very sorry that i'm just now seeing your response! i definitely agree with everything you have written, we can't continue this pattern of ostracization from our community. i'm not in the area but we can certainly connect virtually, i'm at nattyreb@gmail.com, please be in touch! i'm honored by your note, Leroy.

    Reply
  9. Debs

    well there are times when things are hard and the world around harsh, so thanks to leroy for sending this link on and to sis for writing it and to BV for publishing it. its well written, honest, witty and well researched. you dont get that in many non black places let alone when writing about disabled people and the effect that ignorance has on us.
    i am in the UK and i am all alone, there is no sense of community, or understanding or of willingness to open minds and look beyond where the individual is so reading this gives me hope, i am not as alone as i sometimes feel or think i am.

    its inspired me to write again and when i do i will recall this moment and the sense of pride it has instilled in me.

    peace out people xx

    Reply
    1. Marpessa

      Thanks so much Debs for your comment, i'm so grateful that you read and responded and PLEASE post your writing, i look forward to reading it! Stay strong and forward ever!

      Reply
  10. Marpessa

    Neli Latson is a 19 yr. old autistic boy who fought back against a police attack that was prompted by racial profiling. He was beaten, pepper sprayed, and is facing 10 1/2 yrs in prison for charges of assaulting this cop, even though he was frightened and didn't know he was being attacked. He has been in the prison hellholes stlll enduring abuse since June, 2010, he must be released! Please, please support, visit the home page at http://www.avoiceforneli.com and sign the petition http://www.thepetitionsite.com/1/autism-and-racia

    Reply
  11. Charles Betz

    Hi, I hord in the news about 5 years an afican autisic person name Gary Schiman was walking back home while carrying grocey's and other supples 2 gang members one of the man camed to him asked to give up grocey's. But Gary didn't understand. So he shot him about 3 times but Gary was pronounced dead while the abulance came in got at Brooklyn. Gary was only 41 at the time. He was lived by his Mom and Dad 2 of his brothers and 1 sisters. Right now Gary's family are now making the foundation called The Gary Schiman Awareness located at Brooklyn. Gary Schiman 1964-2006

    Sincerly,
    Charlie Betz

    Reply
  12. Oforiwa

    Thank you SOOOO much for writing this article! It captures so much of what I feel and desire from our community.

    Reply
  13. John Mario

    There is nothing wrong with my perfect child, how offensive you would even consider such a thing. I am a good mother and he is amazing. I think I will now excommunicate you for having even alluded to any possible deficiency in my child

    Reply

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