What Happened When I started Opening Up About My Son’s Autism Diagnosis

My son, Julian, was diagnosed with autism six months ago. Julian was born prematurely, spent six weeks in the NICU, and has been in therapy ever since.

He’s nonverbal and has a global developmental delay. Needless to say, we weren’t shocked when the doctor gave us the results of his autism testing.

me and juice

When I first started researching Julian’s condition, Facebook immediately started sending every autism related advertisement to my newsfeed. There were shirts I could wear, shirts Julian could wear, puzzle bracelets, bumper stickers — the list goes on.

Honestly, I was bothered by the idea of telling complete strangers that my son has autism. I didn’t have a bumper sticker with my older son’s asthma diagnosis.

I didn’t wear a bracelet displaying my own ADHD diagnosis. Why would I want to wear a shirt telling people Julian has autism?

As the weeks have gone by, and new situations have arisen, I’ve started telling more and more people about Julian’s diagnosis. I even started writing about my family’s experiences on this blog.

Some surprising things that happened when I started opening up:

1. I’ve learned so much more about autism.

At Julian’s ‘official’ diagnosis appointment, his doctor gave me a pamphlet, instructed me to find an ABA therapist, and sent me on my way. I felt overwhelmed, lost, and alone.

So I joined a couple support groups online. As it turns out, ‘autism moms’ (and dads) are some of the best resources out there. Many of these parents have been at it for years, following the latest medical advancements and finding alternative therapies.

And thankfully, they are more than willing to share their knowledge with newcomers like me.

2. I’ve found a new community.

When I first started researching the best therapies for Julian, I felt like I was on an island –  I felt isolated. None of my friends had children with autism, so I thought I was going to have to take this particular journey alone.

But the more I reached out, I found people who were traveling along similar paths. I even found myself offering help to people who are just starting to take the first steps with their child on the spectrum.

The simple feeling of community has helped me tremendously.

3. I’ve met the most amazing people.

Once I started to tell my family’s story, other people began telling me their stories. I’ve talked with people who I ordinarily would have never met… and not just from the autism community.

I’ve gotten to know families with children who have rare diseases and newly-discovered conditions. They’ve told me stories of heartache and strength- of sorrow and triumph. I am grateful for their testimonies and continue to be in awe of their courage.

 

 

Opening up about Julian’s condition wasn’t easy. But I’ve found great value in the connections I’ve made and the help I’ve been given.

Maybe those puzzle bracelets and t-shirts aren’t just to spread awareness. They might just be a way to let others know they aren’t alone in their journey… a reminder that autism parents are everywhere, ready to help you whenever you decide to reach out.

What have been your experiences when you started opening up?

 

15 Replies to “What Happened When I started Opening Up About My Son’s Autism Diagnosis”

  1. Aww your story sounds exactly like my sons! He was preemie, non-verbal, couldn’t even get him to sign >.< totally in his own world! Then we started ABA therapy and BAM one year later and it's like a totally different kid. (Still struggles with speech but so so much better and advocating for himself). ABA was deff the best therapy I ever did for him and he loves it! Gives his days more structure and he loooves his therapist like a family member. We did in home ABA and got 30 hours a week, totally changed his life

    Liked by 1 person

      1. Be careful with ABA. A lot of people who have received it have been speaking out saying that it’s abusive.

        It sounds like you’re not doing it all day, which is good. Some ABA proponents recommend 40 hours a week of ABA, which is way too much time for any child to spend working on anything that doesn’t allow for self-directed play.

        Speaking of play, if his ABA therapists try to tell you he lacks “play skills”, that’s a red flag. ABA practitioners have a bizarre, surface-appearance definition of play that completely fails to take into account the self-directedness and joy inherent to the definition of play. Just because autistic kids often play in unusual ways (eg lining up toys, staring at a fan, etc) doesn’t mean that their play is wrong. In contrast, a child doing a rote activity taught to them by an adult is not play, no matter how much it superficially resembles what neurotypical kids do to play.

        Sensory processing issues are also something to watch out for. If he avoids eye contact, or resists being touched, let him do it. It’s likely that he’s acting that way because he’s protecting himself from sensory stimulation that his brain can’t handle. Stimming (things like hand-flapping, rocking, etc) is often an effective way to self-regulate and cope with sensory issues – interfering with stims makes sensory overload worse. And if he is behaving badly more often in a particular situation, pay attention to the sensory context. Is there a lot of noise, movement, etc? Are there fluorescent lights? Is there any other sensory cue that’s disproportionately present in situations where he acts out?

        Lastly, I think you said he has trouble with speech? Don’t depend on ABA to teach him communication skills. ABA is pretty good at teaching kids to parrot back what adults want them to say, but not very good at teaching kids how to express what they’re thinking, or what communication is for. For that, it’s better to use naturalistic methods like modeling language and treating unintentional communication as meaningful (for example, reaching for something as a gesture communicating a request for it). It’s also a good idea to introduce alternatives to speech, such as sign language or speech generating devices, as early as possible.

        Liked by 1 person

      2. Thank you for commenting. I wrote this article a long time before I learned the history and effects of ABA therapy.

        We do therapy for 1.5 hours a day. It is considered ABA, but it’s not at all what I’ve read about. And this company isn’t like others I’ve heard of in our area.

        The therapists go with us to the beach, the aquarium, gymnastics, etc. Now that they have it in the morning, we’re working on self care skills like getting dressed, brushing teeth, and other practical activities before school.

        Since writing this article, Julian has gotten an AAC device, and it has changed his world! I’d love for you to follow us on Facebook. I think you’d enjoy watching the videos I post. Find us on Not an Autism Mom.

        Like

  2. Your son is adorable! Thanks for sharing your story. I find solace and inspiration in the blogs posted by other autistic parents. I remember crying after I knew that something was wrong with my son. Fortunately, now, with early intervention and ABA therapy he has come so far and I really have learned to celebrate his differences. Finally, for us there has been an awakening as the older kids, although undiagnosed, have realised their autistic obsessions and traits..and learned strategies to deal as well. Thanks for another great post.

    Liked by 1 person

  3. You don’t mention that Julian has an identical twin. One day that we were at the beach, a new friend had been playing with his brother and then started trying to lure Julian into playing, as well. I said to him that Julian doesn’t talk and he replied, “Oh, I know…my mother told me!” I realized that word must have spread quite naturally and he was totally ready for Julian’s own abilities. I was grateful to you for sharing and to the other mom to helping her own children prepare!

    Liked by 1 person

  4. I love this. I’ve been so surprised by the networking opportunities that opening up about Maggie’s autism has led to. We’ve connected with people and resources all over the country simply by being open, and have already had the opportunity to be a resource for others working through similar issues with their kiddos. The village is alive and well ❤

    Liked by 1 person

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