Coping with the autism diagnosis

I recently read an article one mother published in which she describes the day she received the news that her son had autism, some 15 years ago. The doctors spent two hours poking and prodding and measuring her son. She recalled waiting to hear what the doctor would say, fully expecting him to tell her how adorable her child was when instead, he matter-of-factly told her “Don’t expect higher education for you son. He has autism.” She left the office and looked around, wondering if everyone was looking at her knowing she had just received life-altering news. “It felt as if we were looking down a dark and endless tunnel”, she wrote.

Fortunately, autism awareness has come a long way since then. While it may still be earth-shattering to receive this news, parents now leave a doctor’s office armed with information and a clear plan of action on how to take the first steps in the long journey of securing appropriate services to help your child – information formulated on the basis of scientific research on the causes and best treatment  practices for autism.

While many of our readers are parents who have been dealing with the trials and tribulations of autism for many years, we have many newbies who may have just received the diagnosis and are desperately seeking advice or information. So we’d like to take this opportunity to open up the blog to comments by asking our more experienced parents to post a response to the following question: If you could go back in time, what would you tell your old self who just received the news that your child has been diagnosed with autism?

The following are some of the wonderful comments that were recently posted on a similar Autism Speaks blog.

“Trust your instincts and your abilities to work with your child. Trust that you know your own child best and while the experts have a lot of training and can offer your child help, you still know your child best and you are going to be the most important therapist in your child’s life.”

“I wish I’d know that autism does not have to equal pain and suffering for parents and their children. It took me a few years to understand that autism can also equal joy and fun and laughter.”

“Don’t be sad about what your child CAN’T do, really embrace all of the things he/she CAN DO!”

“As the parent of an autistic child, you don’t need to become an expert on Autism; you just need to become an expert on your child.  Watch them, study them, and learn what works and what doesn’t.  Then help those around them to understand.”

“Grief and self-pity are natural feelings when you first get the diagnosis – allow yourself to experience these emotions and forgive yourself for them. Once you get past it – and you will – focus all your energy on becoming the best advocate and teacher for your child. Your child will be unique in the way he/she is motivated, responds, and takes in information – and you know them best. Share these “tips” with everyone who works with your child and work together to build upon your child’s unique qualities and strengths.  Always keep looking forward. Appreciate your child for who he/she is including their unique personalities and perspectives. Accept them and take the time to fully connect with them.  He/she will bring so much joy to your life – more than you can imagine.”

“The diagnosis does not change your child; it simply changes how you need to work with your child. Do not be angry at yourself or doctors, it does your child no good. Forget the past and the what ifs, look ahead and set the bar high for everyone, including your child. Keep your hope alive!!”

“Don’t fear the label.  The “diagnosis” will help you get the early intervention services that will change your world later on.  Don’t get hung up on the milestones your child is not meeting and find joy in your child each day.

There is a light at the end of the tunnel even though you cannot see it now. Trust us.

Daniel Adatto, BCBA.