Getting the autism diagnosis from a medical professional

The first 3 years of diagnoses, IEPs, resources, etc.  What a blessing to see the progress we've made since the initial diagnosis.

 After we received the diagnosis from our local ISD for Will, we were told it would be a good idea to get an official medical diagnosis from a developmental pediatrician.  The early intervention program at the public school was good enough for Will at the time.  He was only 3 years old, and he was learning the basics. However the basics took a lot more effort for him.  He was in a class of 6 special needs kids and two teachers.  The therapies were not specifically geared to kids with autism (I believe Will was only one of two kids in the class with autism) so progress was not going as fast as we would have liked.  I had a baby at home, and I had to go back to work after the summer. I knew we would need the extra help.  

Martin, my husband, and I took to the task of researching developmental pediatricians.  At the time, we only found a couple that looked promising and one that was highly recommended online.  We made an appointment and were told to fill out the forms needed for the first visit, which would be with the diagnostician at the doctor’s office, not the doctor.  We would have to come to the office three times and we would meet with the doctor at the last visit. 

Each time we needed an evaluation or a diagnosis, be it at the local ISD, at the doctors, and at every place of therapy we went to, we had our own battery of questionnaires to fill out. “Does your child do “eeeeee” sounds?  Does your child flap his arms?  Does your child answer to his name when called within the first two or three times?” Questions like these made it painful to see how easily Will would probably receive a diagnosis.  Yes, he definitely “eeeeed” (except now it’s more like a high pitched hum), and no, he did not flap his arms, but he paced and jumped in place a lot when he was excited, anxious, happy or [insert strong emotion here].  (He still does this, but he has tools to help him calm down and be more present.)  And no, he did not respond to his name within the first 20 times we called him. We had to touch him to get him to look at us.  Sometimes I had to hold his little face to try to make him look at me, but even then his eyes would look elsewhere.  At that time I didn’t know that eye contact was overwhelming for him and that I had to be creative to get him to look at me.

When we came to the first appointment at the doctor’s office, we found out that Will also had a lot of questions that he would have to answer.  It was very hard for me not to interfere and make the diagnostician ask the questions to Will another way.  I knew Will knew some of the answers, but how the tests are set up, the patient has to answer them without any aids.  So, it was not surprising that Will scored so high on the spectrum.On the ADOS, one of the tests he had to take, he was ranked on a 9 out of 10; the higher the number, the closer to the severe end of the spectrum.  The good news about receiving the diagnosis was that we could now show the insurance companies that he had medical necessity to receive therapies proven to help children with autism: ABA, Speech and Occupational therapies.  

Unfortunately for us at the time, insurance companies were not covering some of these therapies because they were thought to be too experimental.  One of those experimental therapies was ABA (Applied Behavioral Analysis) which is the number one therapy shown to help these kids. It is prescribed more often now so insurance companies will cover them, but be prepared to do your homework to find out EXACTLY what’s covered.  When we started, it was an uphill battle with the insurance companies.  We even wrote a letter to our employers pleading that they include these therapies in their insurance programs.  We had to wait six months until they decided to cover it, but they finally did.  

In the end, our doctor was very nice and happy to help, but unfortunately all he could do was give us the diagnosis, a book on how to raise children with autism, and a few places of therapy that could help us. I felt so overwhelmed at the end of our last appointment.  

But, after grieving the diagnosis again (there are so many layers with this!) we were even more determined to help Will. We started our search for ABA, Speech and Occupational therapy and we found exactly where Will needed to be.  It turned out to not just be perfect for him, but for our whole family.  

Pro-tips:

·     Something I was glad I didn’t do before we received the diagnosis was research what Autism was all about.  I knew there were some symptoms that seemed to arise in most cases, but as they say, each child its own representation of the spectrum.  So, keep in mind always pay attention to your child and what he or she needs.  That way you don’t “add” anything that’s not there.  We moms are probably the best at imagining the worst.  By not researching more at the time, I was able to receive Will’s, and later Stevie’s, symptoms better and do what needed to be done for each child.  And let me tell you that this is a good thing because both boys are SO different.  

·     Give yourselves plenty of time to fill out all the forms and questionnaires.  You may even want to split up the filling out of applications.  Martin did his share by answering some of the forms himself, and it was especially beneficial to have him do this because it made our answers more balanced. Sometimes I would ask him if Will (or Stevie when it was his turn) actually did certain things that I didn’t think he did and Martin would give me examples when they did do those things. As his mom, I didn’t want to see certain symptoms.  This is why I’m also reminding all of you that know someone that you think has a child that might have something, to say something. You might hurt the parents’ feelings, but that’s okay in the long run.  You will have done something amazing for the child, given him or her a voice to get the help he or she is not receiving because the parents a) do not want to acknowledge or b) truly don’t even know anything is going on with their child.

·     Bring snacks and things that your child will find comforting to the appointments. Have patience and go on a day that you’ve cleared out completely so you don’t worry about anything else but the task that’s at hand.  You will be tired and emotionally drained, so make plans to take a warm bath at the end of the day or something to help you relax.  And return the favor to your partner.  You all need a little TLC and healing at this time.

·     Have faith and stay positive.  Ask around and don’t give up on your child, the family you’ve created and most of all, YOU. I promise this journey is ABSOLUTELY worth it!