Dear parent whose child was just diagnosed as autistic,

Welcome to the family. It has been two years since I was you, and from here the time that we did not know about autism seems so far away. I do not know with any more certainty now what my daughter’s future will hold than I did on the day the doctor sat down and confirmed what we already suspected. Everything from an eventual independent adulthood to forever needing daily care is still possible. That last possibility used to fill me with fear, but I am not afraid anymore. My idea of what it means to succeed in life looks different from what it did two years ago; and I think that’s a good thing. We have found so much joy in little every day success that I never would have thought possible two years ago. Our days are not driven by a fear that our daughter must be taught certain things before it is “too late.” Rather, we have spent these two years getting to know our daughter, learning to meet her sensory needs, and have found a way to communicate with each other, even if it’s hard to tell from the outside looking in. We have created our own Happy Little Autism World in our home where our daughter always feels safe and has what she needs to regulate and learn. I would encourage you to do the same with your family and home. It is easier to face the outside world of struggles and difficulties when you are working from a good and happy baseline.

Outside that bubble, it will be hard to not compare your child to others their age. Try not to let it steal your joy. Your child’s future might seem too different from what you would wish for them to be considered good; but it can be. It will be good so long as they are loved and are allowed to achieve on their own time-frame rather than someone else’s, or what people their age are “supposed” to be.

The thing that I did right from the very beginning was to learn from actual autistics. (Here are 3 places to start: Autistic Allies a facebook group, Ask an Autistic youtube series, Autistic Self-Advocacy Network.) Listen to what they have to say about things. They have helped me understand my daughter and sons so much better than I was figuring out on my own. They can help you, too.

Since you just got your child’s diagnosis, you were probably referred to Autism Speak‘s “First 100 Days” packet like we were. I would suggest that rather than doing that immediately you first take some time to process this new information and take some time to emotionally adjust. Panicking and trying to get every “therapy” or diet “fix” on the internet is not going to help your family. Autism is not a damaged brain, but a different way of neural-wiring. Learn what neurodiversity means and then take some moments/days/weeks/months to decided with more understanding what your child actually needs as an autistic individual, and what they don’t. While some would have you rush, I would urge you to take your time and make decisions from a position of rest and of independent research. You got this.

Sincerely,

Anya Warde

 

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