Hang In There Autism Parents

As another April Autism Awareness (or Acceptance, or Action, or Apathy, or whatever A-word you want to use) comes to an end, I just want to remind everyone to hang in there. And when it feels like nobody “gets it,” find your people. That is basically why I started this blog. If you get something from it, I’m happy to be one of your people

If you are new to the autism world, buckle up for the long haul. It will be overwhelming, and scary. But don’t give up. I remember how hard it was starting out. 

A Whole New World

When my son Christopher was first diagnosed with autism, I dove into research and resources. I went to my first autism conference about this time 14 years ago, right before her turned 2. We hadn’t even had a formal diagnosis yet (we were on the waiting list for an evaluation). While I got a lot of good information on A LOT of different topics at the conference, it wasn’t exactly the love and support I hoped for. It wasn’t all comradery and kumbaya. It was like being thrust into a new country and having to learn the language and the culture on the fly. 

In the first session that I went to, which was kind of a round table, I asked a question about diet and juicing. The moderator yelled at me that I was doing it completely wrong, and I better get diet under control right away if I expected to make any progress at all. I was completely humiliated in front of the group, and I absolutely wasn’t going to ask any more questions.

The vendors had lots of expensive products that some moms swore made a miraculous different and some people said was pure snake oil. At dinner, I sat with at a table with a doctor who could only be described as completely miserable. She had never heard of any of the doctors local to me who worked with kids on the spectrum and she told me I better find a good doctor fast. My son wasn’t even 2 years old and I felt like I was so far behind! At the bar after dinner – when I finally felt like I could relax – I was introduced to an autism mom who lived near me and knew a lot of resources, and she made fun of my hair. I didn’t like like this new country, but I knew I had to get used to it because it was where I had to live now. 

Nowhere To Run

After the conference, I went to see my parents, who were watching Christopher and his 6 month old brother.  We had a harrowing trip back (our connecting flight was cancelled and the airline didn’t properly seal the containers that held the breast milk I had diligently pumped after inspecting them, which meant that they exploded in my bag) and I was anxious to relax with people I felt comfortable with.

When I told my parents what I had learned and some of the changes we needed to make, especially about limiting toxins, I thought might have some helpful suggestions. Instead, to my surprise, they were horrified – all of the things I was talking about couldn’t be that harmful! What was I going to do, go live in an igloo? I have to admit it was a lot to take in. But, I was really hoping for (counting on) some help and support, and I felt more alone than ever.

The Long Road

I was depressed and exhausted and pretty sure that I’d rather curl up in a ball than tackle the road ahead. But, I had enough information to start researching medical issues, treatments, environmental toxins, genetic predispositions, and nutrition. I met enough nice, helpful people that I had parents and professionals I could contact if I had questions.

Starting out in the autism world is a deep dive with a lot of information to take in. If you are new to this, try not to get overwhelmed. Write everything down that you’d like to try or learn more about. Focus on a few things, and then add more from your big list to your little do-now list. Be skeptical and do LOTS of research, but keep an open mind.

Find people you trust. This might take awhile, but there is a group for you. Remember though that autism parents are still regular people and there will be people you like an people you don’t. But this might also be amplified – this is a group of people adjusting to a new way of life and learning a lot of new things. There is a lot of hurt and anger and grief – and sometimes people don’t know what to do with that.

Some of the autism parents you meet will be incredibly kind and helpful, but some will be incredibly toxic. There will be people who want to talk down to you and show you how much more they know than you. You’ll find people who want to be in the “popular” autism group (it sounds dumb but it’s true) and you might feel excluded. And you’ll meet people who are more interested in feeling sorry for themselves than taking any action.

And you will also find your people.

Hang In There

Don’t give up on that. Because autism isn’t about superiority or exclusivity or popularity. It’s about helping your kid. You don’t have to be the best autism parent – just keep learning and keep going. And, most importantly, trust your instincts – about the path you take and the people you take it with. And HANG IN THERE!