From a parent’s perspective
We got the diagnosis for my son on an ordinary day. We stepped out of the car towards the hospital with a child that had no label on him and we came back in the car with a child that had a label sitting next to him. I left him at the nursery that day in the afternoon and the teacher asked me how it had gone and I told her. She turned to me and said, “It doesn’t change who he is. He is the same person he was before you got the diagnosis. He is the same person after.”
That was right and I felt nothing but love for him as he waddled off towards the train on the nursery floor giving me a wave. I was less generous to myself.
I felt waves and waves of guilt washing over me. It was my fault. I had failed as a mother. It was because I hadn’t really had my vitamins when I was pregnant. It was because I hadn’t fought harder to have a caesarean birth when I had been in labour for two days and he must have been traumatised before he even entered the world. It was because I had gone to work when he was 10 months old. It was because I had fed him too much, too little, the wrong things. It was because I hadn’t given him Vitamin D supplements…it was…
If you are at this point you have to stop and remember.
1. There are no known causes for autism except that genetics plays a role.
2. Getting the diagnosis does not make everything on the internet true for your child. Everyone on the spectrum is different. You can’t believe that every sign or characteristic of autism will be there in your child.
3. There is a long journey ahead and to be able to go with them on this journey you need a lot of love. Starting with yourself.
A parent
The diagnosis process varies in each country and can include physical examinations and other medical tests; assessments in different settings; reports from parents and schools; family history; assessments of other family member and input from professionals such as speech and language or occupational health therapists.
Irrespective of the process, some of the things that you may find helpful in interacting with medical professionals during the diagnosis are:
Further information
To find out more about diagnosis pathways in England, Wales and Northern Ireland you may want to look at the National Institute of Clinical Health guidelines NICE Clinical Guideline 128 and the SIGN Clinical Guideline 145 in Scotland.
To find out more about the diagnosis process in the US, the Centre for Disease Control website provides more detail on the diagnosis process including development screening and comprehensive diagnostic evaluations.
In Pakistan a developmental behavioural paediatrician, child psychiatrist, child neurologist or a child psychologist may use a combination of diagnostic tools.
Remember the diagnosis will also be hard from a doctor or a therapist’s point of view. To read more about the diagnosis from a Developmental Behavioural Paediatrician’s point of view, please see this article first published in Kevin MD, included here with the author’s permission.
