When your child receives a diagnosis for autism, you are given a booklet about autism and the different services available. It is often overwhelming and confusing. There isn’t always a clear guideline on what to do. One thing I hear often from parents like myself is that it feels like you’re given the diagnosis but not much else. The rest is up to you to figure out. This sometimes means contacting your pediatrician for a referral. I’ve described figuring out what to do next like being tossed in the ocean with a map and raft but no compass or idea where to go. I don’t doubt there are several special needs parents reading this and nodding their heads in agreement.
We did things a bit backwards, which sometimes happens.
By the time Emmett received his diagnosis, he had already had many of the services that are recommended in the booklet. We had been going to speech, occupational, and physical therapy for a year. He had already had an IEP with the local school system and received an autism diagnosis from an educational standpoint. He had also gone through the different testing available, like genetic and auditory. I wanted to make sure I got as much information and testing done as possible while we waited for the call to come in and have him tested for autism. The next thing we were looking at was ABA therapy. I spent over a week on my laptop filling out applications and emailing different organizations about ABA. It took some time, but, in the end, I was able to get him into a fantastic place where he has thrived and made tremendous progress.
Getting an autism diagnosis can be very difficult.
The waitlist can, unfortunately, be long, and the process can take time. You will need to go somewhere like Glenwood or Sparks to name two local resources. They will evaluate your child and sometimes suggest different tests, then make a determination. If your child is school age, you’ll also want an IEP. An IEP looks at the different things your child will need help with from an educational standpoint. Emmett’s diagnosis from his IEP was strictly based on that.
You may also get referred for speech and occupational therapy. There are several places that offer this, and your local school system may be one of those! ABA is an option for additional therapy. Some organizations will come to your home to aid in this. At the school Emmett briefly attended for early intervention, he was also able to receive speech therapy. Now he’s getting speech and occupational therapy at the same facility that he receives ABA, thankfully.
I can’t stress enough that you need to check with your insurance provider.
That has the potential of narrowing down the list of places for you to call and applications to fill out. Many do have wait-lists, so it’s important to prepare for that. The best thing you can do is get on multiple lists.
Lastly, give yourself grace and take time to breathe. Getting assistance can be very draining on top of being a parent and everything else that comes with life. There is a light at the end of the tunnel, I promise. While going through the battle of getting assistance, I honestly didn’t think I’d ever see it, but eventually I did. Also, don’t forget you’re your child’s voice! You’re their best advocate and champion. If something doesn’t feel right or you’re not satisfied with an answer, fight until you get what you need. You’ve got this and are doing fantastic!!
