The Autism Evaluation

Autism Evaluations, what happens, how to deal with the results, and why we got one. This is all things about that fateful evaluation.

Disclaimer: These are my experiences with the autism clinic near us. Yours may be different. I don’t know I have the only experience with the facility I have gone to. Let me know if yours was different, in the comments below.

When I was originally presented with the possibility of autism I was worried about the evaluation. I wasn’t sure what would happen or how it would go down. Would my baby be prodded by men in white coats (which would be terrifying)? Or would it be a person just sitting there watching her? How does it all work? The fear of the unknown with my child was too much for me.

Or so I thought, as a special needs mom. I would have many more times I would think that I could not handle a situation but was able to go through it. This is one of those times. Hopefully, if you are in the same situation as me you will be able to have some peace of mind.

Paperwork, Paperwork, Paperwork

via GIPHY

Before you even go for an evaluation they will want a pile of paperwork from you. If you have documented your child’s first poo they will want it. Doctors records, teachers records, pre-school teachers records, daycare records, developmental assessments, child well checks, vaccines. If you don’t feel like you are drowning in paperwork yet, just wait!

After you collect all the paperwork ever done on your child, they will want you to create more paperwork! We got a couple of different Autism Scale surveys one for each parent to fill out. Along with one about parental stress. As if all the paperwork doesn’t stress you out enough, you are now going to answer questions about stress. 😂You are essentially going to be pulling your hair out at the end of the endless amount of times you answer the questions about your child’s number of words, how they speak, how they function etc. All of these we had to send back, not knowing what the results were, very unnerving.

Before we could even get to this process we had to jump through multiple hoops to get an evaluation. A PT evaluation, OT evaluation, Psychology evaluation, Speech Evaluation. All of these needed to point to developmental delays in order for us to get an evaluation. I talked about this in a youtube video. 

How we finally got there…

After getting the psychology evaluation my little one received a diagnosis of global developmental delay and disruptive behavior disorder (which none of the family agreed with). We didn’t see her as defiant or disruptive we saw her as a child that struggled with communication and getting her needs met.

When not being understood or not understanding what people are asking of her she would have behaviors of frustration. Even though everyone disagreed with that diagnosis. It was the best thing to happen, because that psychologist is the one that sent my daughter to the autism developmental institute.

The Evaluation

So on that fateful day, I got my little from school early and took her to the clinic. We waited a little in the waiting room but she was content playing with the different puzzles they had.

The psychologist came out to get us and introduced herself. I was so nervous. We went into her office where she had a little table that my daughter sat at and my mother in law sat with her while we talked. We were asked all the same questions that were on paper (wonder why they even send those to you). Then she asked everyone in the room if the answers were the same with everyone. 

She asked what are goals were for us to come to the clinic. I stated that I wanted answers for all of her delays, and I wanted her to be able to get more services. I wanted her to be the best she could be with the resources we can give her. The clinician cautioned me, that we might not get an answer for why she had so many delays and that many times it is just the way it is.

I was preparing myself for another time that someone would tell us that they didn’t have any answers and that they couldn’t provide anything more for my daughter. She told us that she was going to talk to my daughter by herself and that we could all wait in the next room while watching through a 2-way mirror. We couldn’t hear what they were saying but it made me comfortable to just be able to see what was going on.

Waiting…

It took about 2 hours of her being with my daughter for us to get called back in. I took my crochet there so that I was occupied but having other family members there for us to talk to was really comforting. It helped me get through the time quickly. 

When we were called back in she showed us the results from our tests that we filled out and mailed back in (so that’s what they were for) and showed us the test results that she had gotten while talking and playing with my daughter. She told us that she was an 8 on the scaled which means she has an autism spectrum disorder. The psychologist stated she was obviously higher functioning. But that she would benefit greatly from learning support and other services.

She informed us that we could get her Medicaid which would benefit her greatly with the most services available as well as wraparound services that come into the home. The psychologist also told us that she was very close to being intellectually disabled that she was borderline. My heart dropped I didn’t know that at all. 

She also stated that because she was in this gray area it would probably be hard for us to get services for her in school but that the diagnosis of autism they would have to take into consideration with her upcoming IEP meeting. 

How to deal…

After leaving the clinic I had to call a friend and process what had just happened. Somewhere deep down inside myself, I had thought I was crazy and that she didn’t have autism. I was scared for her future, I was worried about what I had done to cause this (nothing) and I wanted to be able to make it all better.

The reality is that she is no different a child then the day before, the only difference is that she is going to get more services and more help. Which is what we wanted all along. We also had a “why” for her behavior and her lack of understanding of directions. As we learned there that she had a receptive language delay and it was worse than her expressive (which is unusual). 

A little help from my friends.

My friends rallied around me assuring me that it was okay to be sad. The baby I thought I had, the expectations all died that day. We all in our minds have a vision of how our children’s lives will be. When we are faced with a change in that we need to give ourselves time to grieve. 

I still need times where I vent, I still sometimes lose my cool. However, I am grateful that I have a support system, family, and coworkers. That I can talk to and be able to share the burden of the day to day life with autism.

I am grateful that I have my daughter who teaches me lessons. Lessons I could have never learned with a neuro-typical child. So, in the end, it’s okay to be mad, sad, and sometimes happy that your child has autism. Let the emotions be what they are and let them go.

If you are a special needs mom, tell me your story in the comments below!

As always if you want to join the drama family hit that subscribe button! Until next time!