When I first began noticing that something just was a little off with my son, he was 17 months old. From there it took 8 months to get his diagnosis. When we were waiting for the appointments, I felt like it was an eternity to get there. What I have come to realize is that, sadly, many families wait a lot longer. With waiting lists and doctors being booked up for a year and a half or more. So, what do you do to help your child while you are waiting for the doctor appointment to get a diagnosis? Here are a few things I suggest.
1.) And Most Important, call your states Early Intervention program. Early Intervention was the second step I took, after making our doctor appointment. Just ask your pediatrician for the phone number to your local Early Intervention Dept. When I called, they had someone come out within 2 weeks to evaluate my son, than set up a plan for him and had his therapy started within 6 weeks from the time I first called them. It is so crucial for kids with Autism to get the therapy they need as soon as possible. Early Intervention is a very important step you should do, immediately following scheduling an appointment for the doctor. National Autism Association has a Parent’s Record Keeping Worksheet you can print and use to keep track of everyone you talk to along the way, right here. They also have a great section that lists the different therapies you may have and what to expect, plus links to finding you local therapists. All right here.
2.) Join A Support Group Online. I know this may sound silly, but the thing that helped me the most, as I waited for Billy’s diagnosis, was speaking to others who have been through the diagnosis process or were going through it just like I was. It was comforting to hear stories from others or to get some much needed advice when I was having a hard time with something. My friends and family were always amazing and supportive, but no one truly knows what it is like to have a child with Autism and how frustrating the diagnosis process can be, except for another Autism Parent. I still turn to others today for help when I need something or an ear to vent to when it has been a rough day. I also started a page on Facebook to connect people, so if you have questions or simply want to share your advice, you can join mine too, right here.
3.) Write a list of questions you may have for the evaluation. One thing I realized after visiting our pediatrician, was that I had what felt like a million questions I wanted to ask, but I forgot almost every single one. So, before we headed to the pediatric neurologist, to begin our diagnosis process, I sat and wrote down a list of questions I wanted to ask. That way, when I sat with the doctor at our visit, I was able to get all my questions and concerns answered. I felt better knowing I didn’t forget to ask anything. You may not have a lot of questions, but the process of getting diagnosed can get a bit overwhelming, so you may forget to ask things once you are there. Writing them really did help.
4.) Do some online research, but don’t get too overwhelmed. It can definitely be good to read up a bit on Autism and get some facts. But, don’t go too overboard and google like crazy! There is so much out there on Autism that it can really get overwhelming to try to read every little thing about it. I would never say to not do some research of your own, but definitely know it is okay to not read every article on the internet. One thing I learned through all this, is that what I truly read did not help as much as I thought it would. You kind of learn more through your day to day life with your child than you ever could online. One website I turned to for research and resources was the National Autism Associations website, here. I still go to it for a lot of stuff today.
5.) Give your child a huge hug & breathe! Yes, the whole process is stressful. From the moment you realize that your child may have Autism, to setting up doctor appointments and therapies, to getting them diagnosed. It seems like there is so much to do and not enough time. Just try to relax as best you can. Enjoy your time with your child & find comfort in knowing the diagnosis and help will come. Just hang in there!
Those are just 5 tips I recommend you do while waiting for a diagnosis. Please let me know if you have any tips you would recommend or any questions. It may get overwhelming at times, but remember, you’re doing this all for your child!
**I am not associated with the National Autism Association, nor did they ask me to share their site. I just think they have a lot of great resources on their page, ones that I have used.**