Why you should make friends with other parents of autistic kids

This is a post by Kimberlee Rutan McCafferty, author and mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog about her two children with autism. And the author of the book called Raising Autism: Surviving the Early Years. 

Sixteen years ago this fall my family and I entered the world of autism through our son’s diagnosis at seventeen months of age. I remember being so overwhelmed with my new “to-do” list; diets, Early Intervention, ABA, sensory issues, sleep (or lack thereof) disturbances, eating problems, etc. It was difficult to know where to begin.

The truth is all of my personal needs went on hold for, well, years, but there was one need I did pursue, and I am grateful to this day I have always made time for this endeavor.

And that, my readers, is making friends with other parents.

I have dear friends from all walks of my life- high school, college, work, and the ones I inherited from my husband who became my own. They are all wonderful and supportive people, and I do often talk to them about the challenges of raising my autistic son with high support needs. They get it to a degree, as much as anyone can who is not walking in my family’s shoes. I am fortunate to have these outlets, and have had these people stick by me especially during the years I was so enmeshed in autism I didn’t have much time for friendship. I value them all.

But at the end of the day, sometimes you just need a friend who gets that when you say your son hasn’t slept for three nights what you’re really saying is that you’re afraid he’ll never sleep again. And you need that friend to calm you down.

I have had the great fortune to make a number of friends with similar experiences over the years. I have two children on the spectrum, one with lower support need and one with high support needs, and to be honest I’ve found I needed to bond with moms and dads who were raising similar children in order to find the sounding boards I needed. I found their two types of autism to be so different there is almost no commonality - subsequently it was important to me to befriend people who had similar experiences to the ones I was having with both of my kids.

I want to share with you now that along with exercising and chocolate (I know, they shouldn’t mix well but they do) having people to vent to and ask questions of has saved my sanity numerous times over the years. The connections I’ve made have been invaluable, and here’s how I’ve made them. As an aside, all of these opportunities were pre-Covid of course, but hopefully will be again available soon!

1. When your child enters school, see if you can make contact with other parents in your child’s classroom. One of the best ways I did this was attending every little performance they did and chatting with the moms before and afterwards. If your child’s teacher does not offer opportunities to come to school I would suggest asking him or her if you can send notes home through each child’s backpack. I know it’s awkward to approach someone you don’t know, but some people will love that opportunity and be thrilled to reciprocate. One of my closest friend’s son was my son’s preschool classmate, and they are friends to this day. Playdates can be a wonderful offshoot, don’t forget to include that request!

2. If your school has any type of special education PTA, beg borrow or steal a babysitter and get yourself there. Not only do they usually have very pertinent topics discussed at these meetings, but it’s usually a wonderful environment to meet people. Many will be a bit further along in autism world than you, and can be invaluable resources. Sometimes staff from your child’s school will attend and it’s a great opportunity to meet them in a more relaxed setting than across the table from each other at an IEP meeting. I attended my son’s district special education PTA meetings, and learned invaluable information that really helped me make decisions down the road.

3. If there is a local autism organization in your area, join! I live on the Jersey shore, and we are so fortunate to have POAC Autism services in our backyard. They run parent support groups which are wonderful ways to meet other parents, and dozens of fun events for families which are also a mecca for meeting people. Attending these events will also get both you and your child out, and start acclimating them to being in public, which is so important. I met one of my dearest friends through a support group.

4. Last, if you can swing it (and you get a day or night out too!) participate in some local charity events. We met a wonderful couple through a charity gala, the wife of whom I am friends with ten years later. This checks two boxes- meeting people and having fun which is equally important.