Expert: Paul Johnson - 6/2/2010

Question
I have a question about growing up with Autism. I have a 17 month old daughter and I suspect that she might have some form of it. I have done extensive research on it and I have to say that at this point I am not 100% sure if she has it or not, since she is still so young. There are some things that lead me to believe that she does (prefers to look at ppl from far, not close etc., shy with other people, only knows a few words etc.) and others where I believe she does not (for example she is able to point to body parts, knows all the ppl in our family, no obsessive behavior etc.), so right now I have told myself that there is a possibility and if it was true that she would have some form of high-functioning autism.

But my question is not really with diagnosis because I do know all the right places that I would need to go to obtain the diagnosis. I am struggling with the decision of whether or not I should push for a diagnosis. You see, my daughter was born with a physical disability, she was born with a malformed short right arm. Due to this fact, I know that she will most likely have some struggles in her life, but I always told myself that if I teach her to accept herself and talk openly about her disability, others will accept her too. Now that I have this suspicion about autism, I am questioning whether or not she will be able to accept her physical disability and talk openly about it. I am also not exited about putting another label on her that will make her different in yet another way from others. So my question is, people who are not diagnosed with it, how do they generally cope in life? Do you think, from your personal experience that your life would have been easier if you would have been diagnosed earlier? I do have to mention that unfortunately I come from a culture (eastern Europe) that does not have a very accepting/positive view of disabilities partially because they do not understand them (to most people from my country a person with a disability is just crazy) and although I live in Canada I am mostly surrounded with people from my country. So I am concern with creating a bigger problem for my daughter than she already has.

I also want to mention that I agree with some of your prior posts about many people growing up with some mild form of autism and not even knowing it, for example, my husband absolutely does not like to look people in the eye and I myself have had some sensory issues (I used to bang my head on the couch when I was a child and rock myself to sleep). But I also think that if somebody like my husband would have been diagnosed with a form of mild autism, he would have been look at as different and maybe even not well accepted.

Thank you for your thoughts

Answer
Hey Lessy.

Thank you for your challenging and thought provoking question.

If I were to answer this question a year ago I would advocate unequivocally to go ahead and have your daughter diagnosed for sure. But the question truly is not an yes or no question, truly what you want to know is the degree of Autism the child has.

Autism is a disorder that is social in nature and as such it has a two part dynamic: How we see our self and How other see us. If others do not see much of a problem in our behavior and thoughts they will not react to us and we probably have a very high functioning Autism. That is very rare, usually a high functioning Autistic individual has received feedback from the community that they are odd and peculiar. At some point of hearing this we begin to see why people are picking on us and investigate our issues. This leads to a diagnosis for many of us in our adult years. The lower functioning Autistic individual has received so much feedback about their peculiarities early in life that a diagnosis is pursed by the school or the pediatrician during childhood.

So your daughter should develop her own personality and relationship with Autism. She will then have the ability to share with others what her differences mean to her. As a person diagnosed as an adult there is no way I will accept Autism as a disability. It is a difference in cognition but I am not handicapped by it. I do not suffer because of it. I have always thought this way and most people find it endearing. They accept me as me. An early diagnosis along with a hullabaloo about how Autism is this or that by you will demonstrate to her how you might want her to develop her identity and relationship to her Autism. This is not fair to your daughter. I too was physically handicapped as a child-big deal. I felt no better or worse because of it. Others were making a big deal but it was just another part of me like the color of my skin, the size of my feet or the type of belly button I have.

Let her create her own personalty which will always have to center around her accepting her self anyway.