“…exhibits symptoms consistent with Autistic Disorder… Exhibits impairment in his use of gestures, does not interact with peers, and is lacking in his spontaneous seeking to share enjoyment, interests and achievement with others. Further he has difficulty responding appropriately to others’ emotions and exhibits atypical social reciprocity.”
These were some of the many words I read in the first official diagnostic evaluation we received a little over a year ago. These words struck like a bomb that detonated and scattered shrapnel everywhere causing injury to me – not my son. I healed up, scarred over and went into battle for my son – to find him appropriate therapy and care. Looking at the report, in a way, I feel like we’ve made no progress. He was 3 years and 10 months old when diagnosed. Now he is 4 years and 10 months old.
He still does not use much in the way of gestures to communicate. He does not interact with peers. He has always spontaneously sought to share his enjoyment and interests and so I disagreed with this statement from the beginning. I find it ridiculous that an evaluator is even allowed to make such a judgment when she met and evaluated my son on one day of his life for a total time of about 2.5 hours. Overall though, looking back on the report, it was not nearly as horrific as I remember believing it was at the time I first read it.
My son never seeks out others to share his “achievements”. I think this is because he figures what he has achieved (reading far above his grade level, spelling above age and reciting math equations) is nothing out of the ordinary. He cannot and does not measure himself against his peers. In fact, he has so little interaction with “peers” that he is really incapable of measuring his accomplishments against anyone else’s.
I do not think he has made “progress” in understanding how to respond to how others feel. I don’t believe that he ever had difficulty understanding how to read emotions. He has and had difficulty in knowing what would be appropriate in terms of responding to an exhibited emotion by someone else.
For example, when he was diagnosed, he did not really know emotions too well. To sort it out for himself, he would say, “Mommy to cry.” trying to induce me to perform the requested act. This was not because he wanted me to be sad. He wanted me to exhibit that emotion so he could learn the face that went with sad. He knows all of my faces now and recognizes sad, happy and angry in others.
He met the criteria for DSM-IV’s “Autistic Disorder”, according to the UC Davis Mind Institute’s staff for the following reasons:
X Marked impairment in the use of non-verbal behavior (e.g. eye contact, gestures) to regulate social interaction.
X Failure to develop age-appropriate peer relationships
X Lack of spontaneous seeking to share enjoyment or interests
X Limited social-emotional reciprocity.
X Delayed development of language
Limitations in reciprocal conversation
X Idiosyncratic, unusual language
X Delays in the development of pretend play and imitation
Restricted, repetitive behavior:
X Intense interests and preoccupation
X Inflexible adherence to nonfunctional routines or rituals (isn’t this really OCD?)
Stereotyped and repetitive motor mannerisms
X Persistent preoccupation with parts of objects.
So of all the criteria listed, he did not qualify as autistic in only two categories: “limitations in reciprocal conversation (or they forgot to check that box -which – unless I’m misunderstanding the words – I think he has this problem) and “stereotyped and repetitive motor mannerisms”. He does not hand-flap nor spin repetitively or daily.
He still has trouble with all of it except the lack of spontaneous seeking to share enjoyment or interests (which I do not believe he ever had) and inflexible adherence to nonfunctional routines or rituals. He can be redirected and re-focused when a routine is broken but will need a social story for major changes to process any permanent changes.
He openly uses eye contact and hand gestures (pointing) to those he knows well and trusts. He does not make eye contact with the casual acquaintance or people who are only around once in a while. In effect, he will not make eye contact as a sort of social dissing to those who are not part of his inner circle. Other than that? He is more than willing to make eye contact.
He still has no “friends”. He hangs out with his “friend” B at the mall when B’s mom and I talk at the toy store where the boys play side by side without talking or sharing anything other than space. He considers B his “friend” and B considers my son his friend. B talks but my son does not respond. B is a sweet and patient boy who keeps on giving and trying with my son. My son is lucky to have him around.
My son still has unusual language, intense interests and preoccupation, rigid routines and persistent preoccupation with parts of objects. None of these things on “the list” are all so evil and difficult. I think these traits may help him hone his skills for adulthood.
I wonder sometimes, what changes are attributable to all his therapists and now much to him alone as he gets older. As he grows up, maybe he will be able to tell me. I hope his communication improves. Then, I may feel like celebrating this kind of anniversary.
Remember that it is not where you come from, or not even where you are; it is where you are going that matters most.