At the end of part one of this series, I said no more denial for this family. That is mostly true and we began home based therapy for our son pretty quickly after his diagnosis, but it was still hard to talk about. I noticed it in interviews, and in training sessions with tutors that we never once said that he was the “A” word (autistic). I had reached the point where I could say ‘developmentally delayed,” and in front of a professional I could say “Pervasive Developmental Disorder” and sound like I was on top of things.
Another part of the denial I recognize now is that no word was ever mentioned about our son’s developmental diagnosis to family or friends. At that time, I would have justified this by saying that I did not want my son treated differently. But deep down I know that it was all a symptom of my denial. Ironically, I later learned that many of our family and friends had their own suspicions and concerns but never raised them. Later, they would say that they noticed that his behavior was different but that they were waiting for me to mention it.
When we were with others outside our immediate family our son acted differently than expected for his age, yet I would say that he was tired, hungry or offered a variety of other excuses to account for his behavior. My denial was on display when people would ask why my son did not talk. When I felt really pressured I would tell them that he had Asperger’s syndrome. (Named for its founder, Asperger’s now lies on the same continuum as autism but does not carry the same stereotypes as autism because less people know and understand it.) I could actually say to people that my son had Asperger’s syndrome as if it were a minor issue and that everything was fine, but deep down I was burning with fear and concern. Admittedly, because Asperger’s and autism share similar traits, people may not have second-guessed me because my son was fairly high functioning. Labeling my son with Asperger’s worked for me because often these kids live fairly healthy and normal lives (and truly so can autistic kids, but with much more intervention).
Denial is often a normal part of the stages of acceptance. We each move through it at our own pace. My purpose for writing this blog and sharing my experiences are so that another person’s denial doesn’t slow down early intervention.
It has been over 10 years since the above events happened. They are still so powerful to me. Writing this is just one way I hope I am helping others to find the support they need. Running the Orange Effect and helping families get the services they need for their child’s communication issues is another. If you know someone who can benefit please tell them to reach out.
It is really important to me that anyone who reads this consults with a professional prior to forming any diagnosis about his or her own child. Many children demonstrate one of the signs I write about and yet are perfectly normal. Please know that this is just me sharing my story so that hopefully others’ stories will be easier to tell. I want people to know that there is always hope.