Monday, September 13, 2010

Can't We All Just Get Along?

One of my recent blogs, What I Believe and What I Know, was featured on the Autism Speaks blog, In Their Own Words. I began my essay with a short description of all the activities that Jacob and I used to enjoy when he was young. My goal was to stress that sharing quality family time together is beneficial for both parents and children. My essay went on to explain my thoughts about having a child with a disability and how I’ve come to understand the many ways in which Jacob's disability has given me the wisdom to see beyond it.

Autism Speaks also features the blog on their Facebook page; for my essay, over 500 people hit the "like" button and almost 100 people posted positive reveiws in the comments section on both Facebook and In Their Own Words. “Thank you for sharing”, “”I really connected to your words”, “This is a wonderful testimony”, and “Beautifully described” were just a few. Everyone loved my essay, everyone that is except for one reader named Andy. He wrote, and I'm quoting his words exactly, “I think this post is insensitive. Trips to Europe, museum visits all over the world, actual conversations with your child. So few families are that fortunate.”

Wow, I thought. That was not my intension. Of course, my first impression was that Andy must be on the spectrum; why else would he respond so negatively when over 90 comments were so positive. The Centers for Disease Control estimates an Autistic Spectrum Disorder for boys is 1 in 90, so I figured that 1 negative comment out of nearly 100 positive ones was proportional to the incident of Autism in the general public. But I as further contemplated Andy’s words, I thought that was a more serious issue within the Autism community.

As any parent of a child with Autism knows, individuals on the spectrum present their disability in very different ways. On one end, there are children that are severely affected, unable to communicate and many times having co-concurring conditions which leave them highly impacted. Individuals on the other end are labeled as having Asperger's Syndrome or high functioning Autism. As young children, they look much like their typical peers. They may do well academically, but put that same child on the playground where he has to interact with his neurotypical peers, and he's lost. He doesn’t understand social cues. He may not be able to read facial expressions. He's the child wandering around on the playground by himself with no friends. Hopefully, with intervention, the child will acquire socially appropriate behaviors. Unfortunately, even with these interventions, a large majority do not transition successfully into their communities after they exit high school or college. This is true across the spectrum, no matter what their diagnosis, their level of functioning, the type or the amount of hours of services they've received. As young adults, the majority lack meaningful employment or close friends or personal relationships. And a very small number, as little at 5% or less in some studies, live independently.

I know firsthand the obstacles of raising a child with a disability. I know how frustrating it was when Jacob had a difficult time in the classroom. I remember how rigid his behavior could be. I was lucky he liked to hug and snuggle. I can recall how great it felt when Jacob had a great day at school. I also remember the sweet child that he was and still is, though it is now masked as that strange creature called a teenage boy. But do I feel superior because Jacob is less impacted than another child with Autism? Am I happier that Jacob can speak because another child with the same disorder is non-verbal? Of course not. If anything, I feel great empathy for those parents that are enduring more difficulties than I faced. I completely sympathize with how tough it can be for the entire family when one member has Autism.

I saw this same sentiment again in a recent post on that same Autism Speaks Blog. The essay was written by an individual with Asperger's Syndrome in response to the way the American Psychological Association (or APA) is proposing to diagnose Autism in the next addition of the Dianognostic Manual of Mental Disorders (or DMS). For those of you unfamiliar, the DMS the book used by professionals to diagnose psychological disorders. In the current edition of the DMS IV, Autism diagnoses are now separated into several subcategories one of which is Asperger’s. In the proposed draft of the DMS V, which is slated to be published in 2013, the APA will be lumping all of the subcategories into one diagnosis which will be Autism Spectrum Disorder. In other words, all Aspies will no longer have Asperger’s Syndrome; they will have Autism.

As an Aspie, she was very opposed to this change. According to her, “it will serve as a mockery to those who are severely affect by Aspergers, and it will attack the identity in which many Aspies take pride.” She went on to say that the Asperger’s label gives an impression of intelligence and ability and that people with Asperger’s are brilliantly gifted and capable individuals whereas people with Autism are thought of as needing institutionalization and not able to live independently. She added that taking away the Asperger’s diagnosis would dangerously stereotype Aspies and the lack of the label will interfere with their ability to be employed or be promoted in their occupations because they will now be associated as having Autism. She supported her opinion with many more details on how the APA was wrong to take away the Asperger's diagnosis, but I'm sure you get the idea. Maybe I was misinterpreting her comments as Andy has done with mine, but it seemed to me if the author thought of herself as superior because she has Aspergers and not Autism.

In my opinion, it is very sad that that Autism Community is so divided. Acceptance, not segregation, should be the goal for all people regardless of their differences. I know I do not look down upon parents of a child that is more impacted than Jacob. I do not feel superior to parents of non-verbal children because Jacob has the ability to communicate. I don’t think that it is better to have a child with Asperger’s than it is to have a child with Autism. I hope that all parents wwill be able to remediate the core deficits of their child’s disability. I want all children, because of their abilities and regardless of their disabilities, to ultimately have the chance to live happy, healthy and productive lives. I want every child to succeed as I hope Jacob will be able to do one day.

As the saying goes, the grass is always greener on the other side. Unfortunately, this is not true when you have a child with a disability. It is true that a more highly-impacted child will take a much longer time to show progress, but that doesn't mean the parents of higher-functioning children will have an easy time raising thier child.  No matter what the issues, it's an uphill battle every step of the way, and the journey that each of us must undertake bears much weight on our shoulders.  I too have faced many challenges with Jacob, but I also feel blessed to him in my life even though at times it was very, very difficult. I don’t regret for one moment what both he and I have experienced. His disability hasn't been something I wanted in our lives, but he is who he is, and I love him no matter what, always and forever.

Jacob will be 17 in just a few weeks, and I've seen tremendous progress since his initial diagnosis at age 3 1/2. For that I am truly thankful. But would my happiness become source of jealousy of a parent whose child hasn't been so successful? I certainly hope not, but, unfortuately, it just might be.

6 comments:

  1. At fourteen years old, I struggle with a plate of Moderate Asperger's, Schizoaffective Disorder (Schizophrenia and Bipolar 1), Sensory Processing Disorder, Attention Deficit, Tourette's, Myoclonic Seizures, Severe Acute Anxiety, Post-Traumatic Stress Disorder, Dissociative Disorder, Obsessive Compulsive Disorder, and traits of Borderline Personality Disorder. I have been inpatient twice, and have been through intense (all day) outpatient for a month. Through the years, I have also suffered from Separation Anxiety, Anorexia, Bulimia, and Self-Injury. In terms of functioning, I am far into the high functioning range for nearly all my complications. In writing and History I excel, with a higher verbal, comprehension, and reading (college-level) than most neurotypicals. I am a walking textbook of information, especially on Psychology (my passion), most likely a side effect of my Asperger's. When most kids get home and hop on Facebook, I research fMI results on psychopaths, Jungian psychology, fear responses in the brain, and post-death analysis on many supposedly mentally ill or autistic figures. I know I am blessed with the way my card was drawn, and I don't see myself as any better. If anything, it just motivates me to help those deeper on the spectrum of things (Autism or not), as I still have enough of an understanding to see what may be going on. Yet, I struggle too, even after intensive treatments: mood swings still occur, delusions can pop up, depression rears its head, sensory issues are terrible, social situations are like trying to comprehend Arabic in its native form, I still resort to self-injury at times, my voice doesn't always sound right, I don't always act socially appropriate (who knew that responding to "What are you up to do?" does not normally consist of an all out explanation of the collective unconscious?), frequently isolate and ignore others, and self-stimulation (hand-flapping, spinning, etc) persists. I fall somewhere in between the geniuses with countless degrees and those barely communicating.

    Yet, I do not feel more or less entitled in the Autism community. Everyone, no matter which disorder we are talking about, presents their symptoms in different ways, in different combination, and in different degree. There is no low or high functioning, just "Erika Functioning", "Jacob Functioning", and so forth. There is no one cause for any brain or neurological dysfunction: ever person's case is as unique as their brain. We are one community, and should use our varied insights to help one another. Like you, I just want everyone to get along and accept one another. I believe the fighting and resentment comes from the unresolved pain and greif of those involved in this life, and that is not to be invalidated or criticized; however, fighting will get us nowhere in this long road, especially when so many of us just want to help those still dealing with all that pain. Somehow, though, if we are to figure this puzzle out, we have to find a place where we can relate and celebrate common ground.

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  2. As for the writer with Asperger's, I can, being an Aspie myself, understand her point of view. For many on this end of the spectrum, there is conflict and ambivalence with the word "Autism". Society has such a negative - or possibly, fearful? - view of the word (Thank You: Rain Man). They relate with institutions, screaming, and babbling. That does exist; however, as you know, there is so much more than that. Many of the neurotypicals don't. When they think of Asperger's, however, many will relate it to eccentric geniuses who excel at their particular interest. Obviously, these stereotypes represent the extremes. Unfortunately, many Aspies themselves fear associating with the term Autism. Though they strive for a view of acceptance, in the back of their mind those images of hopelessness and alienation scream to them. They fear. When they see themselves, functioning and working with a family, they want to panic and run at the very thought of associating themselves with the "A" word.

    On the other side of the fence, many take pride in their "Aspie" title. Going back to public stereotype, we represent those quiet, awkward, eccentric geniuses and artists. We embrace our quirks and social ineptness, affectionately consider it a huge part of us to be proud. Out of this came the Neurodiversity Movement. In many ways, I relate to this tenfold. Among my peers, I am that quiet, awkward student who, when she opens her mouth, stuns everybody into philosophical silence. I am a writer, thinker, philosopher, Jungian, psychology-fanatic, artist, and with a mind that adsorbs everything. I still relate and am involved with the greater Autism community; but I enjoy my bit of "Aspie Pride", too. When it goes out of the books, I will hope the new umbrella of "Autism Spectrum Disorder" will open ways for wider acceptance; however, in no way will I stop referring myself to an Aspergerian.

    Either way, I am my Autistic self, and proud of it.

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  4. Very well said. I've seen a lot of in-fighting among parents of children with Autism online. I've been fortunate so far that with my RL group, so far, it hasn't come up. We have children all over the spectrum.
    Erika, your comments are very insightful.
    "There is no low or high functioning, just "Erika Functioning", "Jacob Functioning", and so forth." So accurate! Thank you both.

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  5. I have been fortunate so far that I haven't really experienced this infighting. Like you said this is so hard for each of us with our own set of circumstances. To compare is futile. It still hurts.
    At the end of the day we are all just trying to give our children all we can to help them succeed.
    Thank you for posting this

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  6. To Erika: Thank you for sharing such amazing thoughts. I am confident that you will accomplish great things in your life. There is so much more to you than your dianosis. I understand and support your reasoning for referring to yourself as an Aspergerian, but there is so much more to you. Accepting yourself is important and autism is just a part of the wonderfulness that is you.

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