Why diagnosis is important

People sometimes say that they are against labels.  They argue that labels are stigmatizing and that they lower expectations. However we are all given labels throughout our life; it is impossible to escape them! Some children get given ‘good’ labels such as ”clever”, ”bright”, a ”high flyer”. Other children are given less appealing labels such as ”lazy” or ”rude”. Labels are superficial descriptors because they only touch the surface of what might be going on in that person’s life, and they often completely miss the real problem. Sometimes a person might appear to be ‘lazy’ when, in fact, they are not being lazy at all  –  perhaps they are struggling to process lots of information,  or they are very anxious, or they do not understand what is expected of them. Sometimes the correct label is autism. Whereas the ”lazy” label is derogatory and incredibly stigmatizing, the autism label can open doors to support and understanding. The person can begin to understand that they are not ”lazy”, but have very real, biologically based challenges, and this is not their fault. Ideally the correct label of autism should be given in childhood so that the person knows almost from the start that they are not to blame for their problems. However, in many cases the person is not diagnosed until adulthood. Unfortunately a lifetime of being given wrong labels can severely erode your self-confidence, and even once the correct label is given, old labels die hard.

I was one of the unfortunate ones. I was not diagnosed with autism until I was 21 years old. I did not know why I struggled so greatly with staying organised at school, following instructions, or  completing my homework without a great deal of parental supervision. I did not know why I could not maintain friendships, and why I struggled to process the world around me. I formed my own explanations: maybe there was something wrong with my personality, perhaps my parents should have sent me to more after-school clubs when I was younger. I felt very misunderstood and incredibly different to the other children. It would have helped enormously if someone had sat me down and explained to me why I found socialising so difficult, and why I struggled to learn at school. It would have helped if they had told me that I was not stupid, but that I learned in a different way because of being autistic. It would have helped if they had put me in contact with other autistic children in order to show me that I was not alone.

The consequence of late diagnosis can be low self confidence and deep feelings of insecurity. It can take time to incorporate the diagnosis into your sense of self – I am still trying to work out what it all means 7 years later! I really wish that I had been diagnosed as a child, or certainly before I hit adolescence. So please, if you think your child might have autism or any other developmental condition, do get them assessed; the earlier the better.


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