When the moment comes to deliver a diagnostic outcome to a family it is always in my mind “what will this diagnosis mean for them”? Even though I have delivered feedback to families hundreds of times I have quickly come to appreciate that each family and child is individual. Their journey and history, what they hope to gain from this assessment and their reaction will all be individual. Some of you have been through so many appointments, professionals, opinions and red tape to get to this point but have known all along that ASD was what was going on for your child but were not listened too. Some of you have literally had the possibility of ASD sprung on you and this is all happening so fast that you barely have been able to get your head around it. Some of you feel very strongly that ASD could not be a possibility but have moved forward with the assessment to rule it out. Despite the journey and the history, how you feel about being told your child is on the autism spectrum can never be predicted, and nor should it.
We often say in our feedback session “it is one thing to think it and go through this process but it is another thing to hear that your child is on the autism spectrum. How are you feeling?” Asking this one simple question has meant that we have been there for that moment of emotional vulnerability when a family actually have to process what this positive diagnosis means to them, and what it means for their child and their future. No reaction is right or wrong, and it can be unexpected or different to how you thought you might or should react.
A positive diagnosis can feel like an enormous weight has been lifted off your shoulders and elicits a sense of relief. That finally someone has listened to your concerns, that there is an answer, a pathway, something to now research and understand. Relief that others will now understand what has been going on for your child and they will know how best to support their struggles and play to their strengths. It can be a relief that finally someone has pieced all of those puzzle pieces together and you can now move forward on the right pathway rather than blindly feeling your way through.
But it can also be one of great grief and sadness. That moment you hear that there is a label for your child’s behaviours and difficulties may be harder than you thought it would be. Worry automatically sets in for what the future will hold, how others will respond and react, how will your child cope and function in this social world we live in. Grief that the dreams and aspirations you imagined for your child the day you found out they were conceived might need to be adjusted. The tears come, and it is not because you love your child any less but because it feels like the world came crashing down when you heard the words “we do feel your child presents with an Autism Spectrum Disorder.”
Or your reaction may be a combination of any of these. Or change day to day after the diagnosis. Whatever you feel, feel it deeply. Let yourself absorb these emotions without judging them. No one can ever how tell you how you should react. And no reaction is wrong or deserves guilt.
Most importantly, a common reaction after a positive diagnosis is the thought what now? And this is the most important part of the assessment process. What is next for your child now that we know the diagnosis? What’s next is to remember that they still have a wonderful personality that is outside of ASD. But you learn what ASD means and you learn what parts of ASD are intertwined in their personality as their strengths and difficulties. You encourage and nurture the strengths and see what interventions or strategies will best support and develop their difficulties. You build an allied health team around you and your child that is supportive, who will listen to your goals and who will work in a collaborative manner. You reach out to family, friends or other ASD parents and build a support network around you. You embrace the quirks and amazing abilities ASD has given your child and you help them learn those skills and behaviours that do not come as naturally to them as others. You celebrate their “ability” and every single milestone, no matter how small, and continue to do your best to help them make gains in areas that are holding them back. You love them just as you did before you entered the assessment room.