15 Things I Tell My Friends When They're Facing an Autism Diagnosis
Autism diagnoses are on the rise, and so I wasn't surprised when two of my friends recently approached me with questions about their sons' looming diagnosis. I've had so many people—other moms, dads, and professionals—help me better understand how to parent Liam, my 7-year-old non-verbal child with autism, over the last four years that I was happy to share what I've learned. I wish someone had told me these things on the day my son was labeled autistic, and I hope they help other parents facing a similar moment.
I'm here to listen.
Your friends and family want to hear you talk about autism. We want to know about your fears, hopes, and what keeps you up at night. Talk to us. Reach out. We are here to hold you and we want to help you.
It's hard, but it will be ok.
Getting an autism diagnosis can be hard,but as a fellow autism mama pointed out to me: your child is the same as he was before the diagnosis. The diagnosis is just a tool to help you better understand the way his brain works.
You must be an advocate.
Autism makes advocates out of most parents. I've met moms who've set up community advocacy groups, who've waged legal battles, and whose writing raises awareness. Be prepared for this role of advocate. Be ready to ask questions, direct programming, say no to therapies that your gut tells you aren't working, and be proactive.
Educate yourself about government services.
There is a lot of help out there, but you have to find it. Research government services and see what your state offers. In Wisconsin, where my son got his diagnosis, there was an Early Intervention Waiver program that funded intensive therapy for three years. But the waiting list for the program was over a year long when we signed up, so it's important to get on these lists as soon as possible.
Be bold, be brave, be patient.
One of the biggest things I sense from friends is fear or shame about taking their children out in public. I remember this—my son's behavior was erratic, and I found the "helpful" advice of strangers frustrating, condescending, or both. I decided, however, that I had to take him into the world, come what may. And so we went places like the art museum, the grocery store, and coffee shops. It wasn't always smooth, but in time, Liam learned how to behave in these community settings and I could take him even more places.
When it gets too overwhelming, just breathe. It sounds simple. It sounds silly. But it helps. Taking ten deep breaths—even when my kids are having tantrums, even when I've been on the phone with insurance companies for hours, and especially when life makes me want to hide under the covers—can be immensely helpful.
Find ways to make the daily challenges more livable.
Like many kids on the spectrum, my son has erratic sleep patterns and many other daily living challenges. One of the first things I tell my friends is to try to make daily living as easy as possible. I share sleep tips and we brainstorm things like how to rearrange a house or schedules, just to make life a bit easier.
Support your child's interests.
Many adults and kids with autism have written about why they like to watch the same TV show over and over or perform the same action repeatedly. It's for comfort. It's predictable, and it's something that all of them encourage parents to support. Whatever it is that your child likes to do, let her do it (as long it doesn't hurt anyone, of course).
Understand that behavior is communication.
If a child can't talk, his actions are telling you what he wants to say. Watch, "listen," and try to understand. Also be aware that sensory issues affect many children with autism, and their behavior may relate to sensory overstimulation.
Communication is key.
Autism is primarily a communication disorder, and much of my son's problem behavior and frustration was alleviated once we got more robust communication methods in place. I recommend the Rapid Prompting Method (RPM) and the video "A Mother's Courage" to help my friends start thinking about communication options.
Be wary of "cures" and "recovery."
One of the first books I read about autism was a "recovery narrative." It was well-wrttien, but what it told me was that if I just worked hard enough, poured enough money into chasing a cure, and found the right combo of supplements and therapies, my son would get over his autism. It's a destructive mindset to have, and it caused me and my child heaps of stress. Autism is a neurology, it's a different way the brain is wired. You can't recover from neurology, and a more productive focus for everyone is helping your child become his or her best self.
Seek community online and locally.
Find groups in your area, but also look online. I always send my friends to Jess Wilson's fantastic blog, "Diary of a Mom". Her community is huge, and I recommend "Welcome to the Club" as a great starter post. There are also Autism Societies in most states, and looking them up can help connect you with other parents, support groups, and events that will be fun for you and your kids.
Learn to speak the language.
There are a lot of terms that get thrown around during meetings with autism professionals. Luckily, there are helpful glossaries out there that can help you understand the vocabulary of autism treatment.
Don't get bogged down in the debates in the autism community.
There are a lot of camps in the autism community. Some people want cures, other blame vaccines, and others demonize autism. Autism self-advocates are changing perceptions of the disorder through their advocacy. People will tell you to cut gluten, try cod liver oil, and the fights can grow nasty. I align with certain views, and I try to live those. But I tell my friends to keep the focus on their child as they wade through all the extra noise in the autism community. I also always recommend that parents new to a diagnosis read what writers with autism are saying as a way to navigate some of this debate.
Never lose hope!
Things will change. Your child will grow. Keep an open mind and heart. Hope for the future, live in the present. I know that hope sometimes takes practice, as one my friends says about parenting her child with autism and cerebral palsy, but it's an exercise that's well worth it.
Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter @jamiepacton