Autism

When my son Max was diagnosed with autism shortly before his fourth birthday, there wasn't a whole lot of information out there about this disorder.  There were a few books here or there at the library or bookstores and what was written was rather dismal.  Autism was considered a rare and severe diagnosis.  Many parents were given dire predictions that their autistic child may never talk or become independent.  Some were even advised to put their child into an institution.

But oh how the times have changed over the past couple of decades.

Whereas once it was difficult to find much literature about autism now there is an overabundance of everything from information about genetic research to biological treatments.  Not so long ago parents who learned that their child had autism were given no hope.  Now we have vast array of support and real options for our children to reach their full potential and live a happy life. 

Now when I go to my local bookstore there are at least four or more shelves dedicated to autism alone.  And just think back in the day (about ten years ago) when we started Max on a gluten-free dairy-free diet I had to mail order his food!  Now we have it good.  Even Betty Crocker has gluten free mixes.  Oh the times they are a-changing.

Yet despite this overload of information, resources, and support, in many ways autism remains a mysterious disorder.  We still don't quite have a handle on what autism is or how to treat it.  If you don't believe me get a bunch of parents, teachers, therapists, and assorted experts together and see if they can come up with a consensus on what autism is or is not.

This lack of consensus for a consistent definition of autism is reflected in the current controversy over how to accurately diagnose this disorder.  As we speak, the  Diagnostic and Statistical Manual or DSM (used to diagnose mental health and developmental disorders) is about to drastically change.  The authors of the new edition to come out in May of 2013 wish to "improve" the diagnosis of autism.  One such improvement includes the elimination of Asperger's Syndrome from the manual.  This potential change could forever alter how we view autism and related disorders.  (We are going to discuss Asperger's on a separate informational page on this blog.)  So if the experts and diagnosticians are having difficult coming up with a consistent definition for autism, imagine the confusion for the everyday individual.

I remember a well meaning neighbor of mine who came to visit Max and me with her young daughter.  At that time both of our kids were about five or six.  I was still getting used to Max's diagnosis and had a lot of difficulty explaining it to others.  My friend had told her daughter prior to their visit that Max had autism.  Her daughter, eager to understand, began making rapid fire commentary.  "My mommy said that Max has autism and it is a disability.  But Max isn't in a wheelchair.  He can walk.  Why is he disabled?  How did he get autism?"  Needless to say I was speechless.  I honestly had not thought through all the terminology used to explain Max's condition nor was I able to explain this in language that a six-year-old child (precocious as she was) could understand.  Then I remembered the writing on the back of one of our Autism Run t-shirts from the autism society.  In broad lettering the t-shirt spelled out some of the possible symptoms of autism:

My Child has Autism

Autism is a developmental disorder
that affects how a person senses
and processes the world.

He or she may communicate
in ways that seem unusual to you.

My attempt to translate this message to my friend's daughter left her more confused than ever.  "But Max can talk.  I have heard him."  My inadequate response was that while Max can talk it is very difficult for him to do so.  Both mom and daughter looked at me quizzically and I began to wonder myself if I knew what autism was.  Let's just say that it is not an easy disorder to understand let alone explain to someone else.

Shortly after Max's diagnosis, I heard a saying:  "When you have seen one child with autism then....you have seen one child with autism."  Since autism is considered a spectrum disorder with a great variability in the severity and presence of symptoms, no two children with autism are going to be alike.  This is an understatement.  In seeking out other parents who have children with autism I found this out the hard way.  I had expectations that the other parent would be facing similar issues as we were and this was hardly the case most of the time.  While we were still struggling with building a simple vocabulary beyond fifty words at age five, another child of the same age and diagnosis might be reading years beyond their grade level and conversing about the feeding habits of dinosaurs.  And while Max eventually did learn to speak and use full sentences another child with autism who is years older than Max may be totally non-verbal and get around by using a wheel chair.

The bottom line is that one cannot assume anything about a child based on a diagnostic label.  

One of the issues with a label such as autism is that it says nothing about the unique personality of your child.  Autism doesn't describe your child's smile, the way they express love, or how they cope with adversity.  The other issue is that autism may be such a broad umbrella of a diagnosis that it tells us so very little about what that child needs to grow, learn, and become independent.  Yet for lack of a better system we are left to these diagnostic terms.  Are such labels helpful or hurtful?  That is a discussion for another time.

In the meantime here is information on the current (2012) diagnostic criteria for an autism spectrum disorder from the DSM-IV:

[The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV]
(I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)
    (A) qualitative impairment in social interaction, as manifested by at least two of the following:
      1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
      2. failure to develop peer relationships appropriate to developmental level
      3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
      4. lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids )

    (B) qualitative impairments in communication as manifested by at least one of the following:
      1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
      2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
      3. stereotyped and repetitive use of language or idiosyncratic language
      4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

    (C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
      1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      2. apparently inflexible adherence to specific, nonfunctional routines or rituals
      3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)
      4. persistent preoccupation with parts of objects
(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
    (A) social interaction
    (B) language as used in social communication
    (C) symbolic or imaginative play
(III) The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder

 If you suspect that your child may have autism please get a referral from your pediatrician for you child to be observed by a diagnostician skilled at identifying autism spectrum disorders.  The earlier your child is given an accurate diagnosis, the more opportunities your child will have for effective treatment.


There are many resources and supports available for individuals with autism and their loved ones.  Here are some to get you started:
If you have other resources or links to share on the topic of autism please let us know!



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