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hope-diagnosisWhen I was a parent new to an autism diagnosis, I went through a lot of different emotions. Some of them were useful, and some of them were not.

  • Among the useful ones were relief: at least I knew what it was, why he had missed every infant milestone, why he didn’t speak much.
  • Then there were the unhelpful ones: grief that this is a diagnosis he will carry for the rest of his life, disappointment that there is no “fix,” no medication or dietary solution.

As it turns out, a lot of those unhelpful emotions were selfish: wishes I had that were dashed, hopes that it would be easy, grief that things weren’t going to go the way I expected they would.

Tips for Dealing with Unhelpful Emotions
The good news was that I was able (through the help of good friends and a strong support system) to recognize those unhelpful emotions for what they were and set them aside to help my son find his own abilities and start to learn to make his way in the world. Here’s how it worked for me.

  • Learn the difference between expectation and hope. I have learned that what I expect will happen, often doesn’t. Yes, I’m the mother of two boys who deserve all the best, but getting there takes work. Just because I want it doesn’t mean I will get it. The world doesn’t revolve around my desires.
  • Have hope. On the other hand, there’s hope. I hope for my boy’s happiness and independence. And there are things I can do to help that hope on its way. But I can’t take it for granted (that’s expectation again). I have to act.
  • Act! And acting means I have to stay in touch with him at the dinner table and before he leaves for school in the morning. I have to stay in touch with his teachers at school, with his tutor before and after his sessions. I don’t have to be an expert at education or autism, but I have to know what’s going on in his world and seek out the resources that will help him learn and grow.
  • Stay connected with the rest of the family. I also have to stay connected with my husband and my other son. They are part of this process as well. My husband and I have to stay on the same side; go look up the stats on divorce and special needs children–it’s heartbreaking. But it’s not inevitable. Talk, stay connected and stay hopeful. And about my other boy, he needs to know that he’s on the same side as well. He has his own hopes, and they don’t all revolve around sitting in a therapist’s waiting room while his brother is in session.
  • Be present in the community. Then there is the larger community. I can’t hide, and neither can he. The only way to get past other people’s assumptions about autism is to present them with a real kid living with it. It’s easy to grow in compassion and trust when you grow up together, so we find ways to engage with the school, with our neighbors, and with the community.

It wasn’t easy to hear the words of that diagnosis. I spent months feeling sorry for myself and wishing it were otherwise. But that wasn’t useful for my son or my family. The way around it was to learn to be an advocate. It takes work and patience and practice, but the rewards are tangible and completely worthwhile.

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Kate Dran is a user experience analyst, professional writer, autism advocate and parent of 2 beautiful and perfect sons, one with autism, one developing typically. She founded Adaptive Solutions Analysis, LLC , a private consulting firm that provides usability assessments and user experience analysis for adaptive technologies that support the cognitive, sensory and motor development needs of K-12 students with autism. She believes that autism-friendly user experience is human-friendly user experience.