The Diagnosis is Autism

My hubby asked the question “what’s the next blog topic Kaz?”

I told him I was thinking about something relating to the diagnostic process. The response from him was to draw in a big breath and say “wow-that’s MASSIVE! You may need to make that blog two parts.”

I started to think there really was two parts for me. The first was the external mechanics of stepping into the ‘system’.  There was diagnostic criteria to be met, forms to be filled in, questions to be answered; professional’s to be talked to.

Then there was the internal and personal part.  Guilt, grief, denial, confusion, anger, relief, exhaustion and heart gripping fear.  Often the two parts overlapped.  Interfacing with the ‘system’ to get a diagnosis was as equally challenging to navigate as the emotional minefield.

After months spent watching my son closely and waiting for something to reassure me once and for all that things were fine, I slammed down on the internal alarm button around the time my son was 16 months old.   I saw multiple behaviours and witnessed development that was not ‘typical’.  I did my research online.   I believed in what I had observed, recorded and reflected upon.  Daily living with my child became a little more difficult with each passing week.   It all translated into me being too tortured with worry to spend my time doing anything else but find out what was going on.  By the time my son was 17 months old I could not be convinced that ‘Nothing was Wrong’, or that I was just being ‘Too Anxious’.  I was incapable of being able to stomach the ‘Let’s Just Wait and See’ line either.

One child health nurse, a doctor, a paediatrician, three speech therapists, one developmental psychologist, countless phone calls and a pretty penny later I was holding the ‘Official Piece of Paper’ and had completed the ‘Official Diagnostic Process’ in Perth,  Australia.  Those months of wondering, watching, waiting and worrying were over.  My son was just eighteen months old.  The world came crashing down.  But it did not come to an end.

Fast forward three years, and I am grateful every day I did not delay. I now know that my son is actually one of the lucky ones.  Against the odds, he got a diagnosis in a timely manner.  This led to him getting appropriate intervention, again in a timely manner, in the USA.   My husband and I don’t know exactly what the future holds, but what we do know for sure is that our son’s quality of life and long-term outcomes are, and will continue to be, better as a result of what has happened over the last three years.

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3 thoughts on “The Diagnosis is Autism

  1. I am a mental health clinician with a disability (Polio). I work with many people, of whom some are young adults who have been diagnosed with Autism. I also work with parents who have young children with Autism diagnoses. Needless to say, I spend a lot of time reassuring anxious parents that the future is unknowable, and that early intervention really does, very often, make a difference. Still, I know the disability road and how difficult it can be. I’m not sure family and friends really grasp how challenging and frightening life can be with a disabled child, or how rewarding.

    • Yes… ‘Challenging, frightening and rewarding’ are all true! Its hard for some parents to start early intervention when they feel so anxious and uncertain. Early intervention is a lot of work. Thanks so much for your comment and the re-post.

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