There are so many reasons why a parent or an individual might pursue a diagnosis. I’m going to talk to our situation here rather than just generalise.
Long before J was diagnosed at age 2, I knew that he operated differently from other children. He found it really hard to do things that other two year olds did with ease – talk, interact, wait, transition between activities, deviate from routines. As a family, we were really restricted in what we could do and he was highly anxious and self-harming. We were in crisis. Once J was diagnosed, we then gained access to a number of therapies and specialist services such as early intervention which was then targeted specifically to his needs. By learning about autism, we learned more about how to help him and so did his extended family and friends. He has grown up knowing he has autism. To him autism is a part of who he is and he recognises the challenges and gifts that autism brings to the table. When he encounters difficulty with things such as crowds, excessive noise, social interactions and anxiety, he understands that he has a tough time with these things because he has autism. But he also knows that he has strategies or that he can acquire strategies to help manage them.
I know many adults who have been diagnosed with autism later in life. Many have expressed that they felt like an ‘imposter’ in the world, that they felt they had to wear a mask, play a part, in order to fit in. Learning about the condition in some cases has really helped them and those around them to understand them better. Some of them lament the fact that, had they been diagnosed earlier in life, they may have had access to more services and support to assist them in operating happily and healthily in the world.
Some people really balk at ‘labelling’ a person with a diagnosis. A label does not change who a person is. A label is simply a way of naming a condition and explaining a set of behaviours. Having a label allows a person to access services and support to help them when needed. Having a diagnosis helps you to identify and access the tools this person needs to be happy and healthy in life. In the case of Autism, the research clearly indicates that the earlier the diagnosis, the more successful the intervention can be.
In my opinion, irrespective of whether it’s anxiety, a learning difficulty, an immune disorder, poor eyesight, asthma or autism, it’s important to name what is happening. If we don’t name the ‘elephant in the room’ we risk further isolating the individual and perhaps causing them more unnecessary duress. In labelling/naming what’s going on for someone, hopefully we empower them to accept and even embrace their condition and learn to manage it so they can live happily and healthily in the world, and thrive without limitations.