Parenting and Autism – Journey to a Diagnosis

I knew right from the age of 18 months that there was something fundamentally different about my son.  In the beginning, I thought he was exceptionally bright. My son learned to communicate with me in sign language at seven months of age.  He could tell me he wanted more, all done, eat, and milk. By 18 months he was communicating verbally in full sentences, usually two or three words strung together when most of his peers were using single words.  It was during this time I realized that he did not really like to play with peers, much preferring the company of adults. I assumed that because his language was so advanced, he found his peers “un-stimulating” as they were unable to interact with him on the same level.  The gap widened into ages two and three; he did not play with children and only rarely would play alongside them. My background in child development reminded me that all children are different and develop skills at different times. I spent a lot of time gathering information but also trying to ‘keep myself in check’.  I kept telling myself, “It is normal for a child to be behind in some areas and ahead in others”. 

When my son entered the school system for junior kindergarten he was four years old.  There were immediate problems. He was too loud, too hyper, not behaving as expected. He did not play with his peers, and instead, tried to tell them what to do as if they were his own toy soldiers.  By the end of senior kindergarten, I realized that my son was really struggling, especially socially, and was not ‘picking up’ on social behaviours and cues from the peers around him. At the park and family functions, he still preferred to play on his own or engage in dialogue with adults.  He did not seem the least bit interested in his peers and I began to realize that this may not be just because of his “brightness”. When he did engage with peers it was awkward or inappropriate (e.g., hands on peers or bossing them around), and I found I was constantly reprimanding him. He, of course, did not understand what he had done wrong and I began to see that the constant corrective feedback (from me, teachers, and daycare providers) was negatively affecting him.  That was when I began my medical search. I was not sure I wanted a label, not sure that it would benefit my child, but I was so worried about his self-esteem and lack of peer relationships that I asked for a referral to a pediatrician.  

I spent the next two years voicing my concerns and trying to get a pediatrician to listen to me.  They all understood my fear when I presented the ‘listing of deficits’ I had created on behalf of my child.  I was in a unique position, as I have all the appropriate language available to me having worked in the service stream with children with intellectual disabilities.  I “specialized” in Autism a few years before my son was born, and knew very well the symptoms associated with Autism. This was the label I suspected for my son. I travelled to the offices of three different pediatricians before I felt satisfied that I was being heard.  The first pediatrician told me I was reaching, that my son was too social. He believed my son was just eccentric and that medication, and some extra time on my behalf, could likely help. Seriously! Did this doctor suggest that I wasn’t spending enough time with my child?  Was he suggesting that perhaps the difficulties I was concerned about would go away if I spent more time with my child? I was indignant. My son is not struggling because I’m a negligent mother!

I pushed onward because I knew there was something ‘different’ about my child and I was starting to understand that he was going to need additional supports.  My son needed a ‘label’ so that he could be identified within the education system to receive the extra support he required. The school could not do anything, including making any changes to how they taught him, because he did not have a specific diagnosis.  I could not access any supports within the community for the same reason. I had all this ‘knowledge’ and a good understanding of how the systems worked. This did not help, I felt powerless and hurt. No one could help; no one could help me support my child. 

The second pediatrician continued to be no help.  He spent 20 minutes with my son and I, and only asked my son a couple of questions about school and sports.  He did not ask me any questions about his development, but rather asked questions about our home life, whether I was married, and what my husband and I did for a living.  As soon as he found out that I worked with children diagnosed with Autism he dismissed me. He told me that sometimes as parents we look for things that are not there and my son was too social to have Autism.  The irony was that I was talking about social deficits with peers, not adults. Neither pediatrician considered that they were not his peer before deciding he was “too social” with them. I left that appointment feeling angry, but I also started second-guessing myself.  Was I seeing things that weren’t there? Why was I pushing so hard for someone to say there was something different with my child? How dare that doctor to dismiss me and my concerns? Could this all be my fault?  

I took a break for a few months because I was angry, confused, and needed to regroup.  Little did I realize at the time, but I was beginning to learn the lessons about what it means to mother a child that did not fit in with the social norms.   I did not speak to my family or friends about what I was doing. Intuitively I felt that they would not understand, and would not be able to offer me anything in the way of support.  Secondly, they were all busy with their own families and I didn’t want to burden them with my worries. Besides, the professionals in the field were telling me I was wrong so I did not hold out much hope that my friends or family would be any different.  Real or imagined, I often felt alone at this time, like I was in it by myself and no one would understand my concerns or worries.  

The third pediatrician required that my husband I meet with her for an hour without my son so we could be forthright with our concerns.  She also wanted a separate hour-long meeting to sit with my son and listen to his concerns and needs. This was such an enormous difference from my other experiences with pediatricians and I was elated.  At the very least, this doctor was going to listen to us and hear what we had to say. At the end of the parent interview, I cried. This doctor, after asking many questions and listening to all my concerns for my child, looked me straight in the eyes and said “You’re the mother.  If you believe your child has Autism then that is the first thing I will assess him for”. After two long years, I had finally found a doctor that treated me with respect and valued the expertise I had because I was the mother of this child.  

My son received a diagnosis of High Functioning Autism while he was in grade two, just before his eighth birthday.  I was personally relieved. I choose to see this diagnosis as a positive step forward. I knew Autism and I had the background to support my child.  “It was going to be OK”, I kept telling myself. My husband and I were strong, we could support our child, he was going to get everything he needed to be successful in this world.  We could do this!

Tarra McPhail, Behaviour Consultant, Mom

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Parenting and Autism – Service and the Education System

Parenting and Autism – A Mother’s Thoughts