The autism diagnosis is a lonely isolating diagnosis. Neurotypical families may think it is difficult, but it is actually thousands of times harder than what some people may think. When my son received his diagnosis 27 years ago, there was no internet. We learned about treatments and services from books and articles. We also networked in-person with other parents. Other autism parents were my lifeline. They provided vital information, and their emotional support kept me afloat. They traveled the same road, and. they were familiar with the roadblocks and pitfalls. They gave me a respite from a world which seemed to contain so many families so different from mine, a respite from people who did not understand, and whose lives I could not relate to. I thank every mother and father who helped me on this journey.
Now that we have the internet, families can learn about services and treatment with a click of the mouse. Online communities can offer emotional support too. The best part is that the logistics are convenient. In-person support groups are still wonderful, but for autism families who are short of time or do not have access to respite care, online resources can be a blessing. There are many wonderful online websites, podcasts, and YouTube channels.
Here are three resources that I especially like:
Finding Cooper’s Voice: The Secret World of Autism
This website also has a YouTube Channel, and Facebook page.
If your child is nonverbal and severe, this website is for you. The experience of parenting a child with severe classic autism is not the same as parenting a child with high functioning autism. Cooper’s mom, Kate, articulately addresses this. It is uncanny how Kate touches on the same thoughts and feelings that I had when I was in her shoes. She has special advice for the newly diagnosed on accessing Medicaid, tips for haircuts, sibling issues, and on dealing with everyday problems in raising a child with severe autism. She has a wonderful post about how she and her husband almost got a divorce. Strain on a marriage is an important concern for autism families. Kate’s videos and posts often move me to tears. She also has opportunities on her website for families to submit their own stories.
Here is Kate talking about how it feels when you realize that you finally realize that your life is so different from others, and you recognize that your autistic child is probably not going triumph over autism:
Live from the Spectrum Podcast
Live from the Spectrum offers a raw and uncensored look into the world of families living with autism spectrum disorder (ASD). Each episode offers real insight around topics such as labels and terminology, inclusion, managing behaviors, and family dynamics. This podcast feels like you are attending a support group. The podcast will appeal to young, school age, and adolescent autism families. I love this podcast, and I am the mother of an adult. Here are links to the first two episodes of the podcast:
Episode One: All over the spectrum
High functioning, low functioning, and everything in between. Life on the spectrum is hard. Listen to how labels affect the individual on so many levels.
http://livefromthespectrum.com/2017/10
Episode Two: Diagnosis Stories
Many parents say it is the day they will never forget or the day diagnosticians validated all their concerns. Faith, Jen and Latoya share their stories of the days their own children received the autism diagnosis, and how their families proceeded with their “new normal.”
http://livefromthespectrum.com/stories
There is also a Live from the Spectrum Facebook page.
Autism Daddy
Autism Daddy is an extremely popular website with almost 8 million total views. Autism Daddy has a 14-year-old son with severe, non-verbal autism and epilepsy. He uses this blog to discuss autism, epilepsy in both a humorous and serious manner. His most popular posts include the following:
• Yes, You Can Get a Handicap Parking Permit If Your Kid Has Autism
• Wifey and I Have Separated
• Autism & Puberty: How It’s Affecting My Son….
Autism Daddy also has a Facebook Page.
Discloser: Irene Tanzman is not affiliated with Finding Cooper’s Voice or Autism Daddy. She is a volunteer for Boston Medical Center’s Parent Leadership in Autism Network (PLAN), a sponsor of the Live from the Spectrum podcast.