We are a military family of five, including two boys, aged seven and six, and one girl who is one. Our boys, William and Tucker, have an interesting story with their autism journey. Prior to having children, I was a practicing child and adolescent therapist, as well as an adjunct psychology instructor, so I am familiar with lifespan and development milestones, and I am pretty well versed in recognizing deficits in development. When Tucker was around six months old, he was diagnosed with extra fluid on his brain, but it did not require a shunt, and we were instructed to watch his development. At every well-child checkup, I noticed that he was not meeting developmental milestones, but my concerns were not heard by his provider at the time. I kept getting brushed off. At his 15-month checkup, I refused to leave without an Early Intervention (EI) evaluation. His provider agreed, reluctantly, and after the evaluation I was told he was “fine” and there were no concerns about his development. This took me completely by surprise because he was not clapping, pointing, or babbling at 15 months. How could a specialist evaluate this child and not have concerns?
We moved to our next duty station and, at Tucker’s 18-month checkup, I refused to leave his provider’s office without referrals. His new provider heard my concerns and immediately referred us to EI at the hospital on base. It was like everyone around us was afraid to say the word “autism” to me, where I was practically screaming, “I know my kid is autistic! Help me help him!” I remember that EI appointment quite vividly. I went into that appointment with a kind woman, and I told her, “Look, I was a practicing child and adolescent therapist. I know what I am looking at. My kid hates loud noises. He isn’t talking. He isn’t pointing, he isn’t babbling. He isn’t safe to keep out of my eyesight for two seconds. Do not be afraid to tell my child is probably autistic.” She took one look at me and told me, “You’re right. Your son is showing signs of autism and sensory processing disorder (SPD). Sit down and let’s talk about the services he needs.” I walked away from that appointment with hope. Finally. I never once grieved that my child was diagnosed with autism. If anything, I finally felt relief that someone was listening to my concerns and I could get him help.
After we had Tucker evaluated, I felt that his older brother, William, needed to be evaluated too. The developmental pediatrician told us that William was autistic and, whereas Tucker was moderate to severe on the spectrum, William was mild to moderate. Tucker was a seeker with his sensory needs, while William was an avoider. William could talk and communicate, whereas Tucker could not. Here, we have two brothers, both with autism spectrum disorder and SPD, and they are completely opposite.
A lot of people try to give us, the parents, all of the credit for the progress the boys make, but we always put it back to the boys and their determination and their entire therapeutic team, past and present. I had one of their providers sit there with me while I yelled through an entire Individualized Educational Program meeting while I was nine months pregnant because the school district was just absurd and being ridiculous. You do what you need to do to make sure that people are going to provide them what they need because some people will cut every corner if you do not hold them accountable. That’s where the importance of advocacy comes in.
I volunteer with Autism Speaks. We contact our state and federal representatives and encourage them to support bills for autism research and funding that can help those on the spectrum and their families. Especially now, when COVID has hit families so hard and some people have had services shut down, it’s more important than ever to advocate for special needs families and the services they need.
I wanted to get into advocacy because I have sat in waiting rooms of therapy clinics or doctors’ offices, and I have heard the struggles that some parents go through to obtain services for their children. It should not be that difficult to receive help, but if you aren’t living this life, then you don’t know how hard it can be sometimes. People can wait for over a year for their child, or themselves, to get an evaluation done or to be taken off a provider’s wait list to receive services. Also, once a family receives a diagnosis, there is a lot of information thrown at them and the family then has to decide where to go from there. The onslaught of information can be overwhelming, and I feel the need to help others that may not know where to start when they begin their journey. Autism Speaks has a great website that can help families figure out where they need to start once they receive a diagnosis or if they feel that they or their loved ones are autistic.
Having my husband in the military has been a blessing and sometimes a bit of a headache, but I don’t think it would be any different if he was a civilian. If anything, we would not have as much access to the current services we do have. When we move, the wait for services can be long. Providers are hit and miss on whether or not they are helpful or knowledgeable. The hardest part was probably when I was pregnant with our third child; my husband was deployed during my seventh month of the pregnancy; and I was high risk, but that’s the life. As a military family, you just grit your teeth, and you get through it, and you try not to disrupt your autistic kiddos’ lives as much as possible. Tucker took his dad’s deployment the hardest because his dad is his best buddy. The deployment was extremely short, but when his dad came home, Tucker was so confused and so excited at the same time.
I am often asked whether we prefer to be stationed at larger military installations or smaller ones, and I honestly think it is what you make of it. We were at a large installation when the boys were diagnosed, and it worked well for us at that time in our lives. We had access to an amazing EI program on base, and we were relatively close to two children’s hospitals should we need to be seen by specialists there. Now we are at a smaller installation and the boys are still thriving. A lot of services are off base, but there’s a children’s hospital in the city, and it has been amazing for the boys. Plus, the local providers and school district are great. Surprisingly, moving did not take that big of a toll on our sons. They adjusted REALLY well, all things considered, since change in routine can upset autistic individuals.
My experience as an Autism Research Program reviewer was so exciting. I was amazed at how much of the research I understood and how so many people were trying to help the autistic community! When you’re asked to be involved with something like the ARP, it can be intimidating, so I was worried that I was not intelligent enough to be a part of this event. However, everyone I worked with was so encouraging, and when I was not clear on some concepts with the research studies, there were others there to explain things to me, so I did not feel lost.
I cannot stress enough how important research is when it comes to moving forward with finding new therapies and treatments that can help the autistic community. Without solid research, a lot of families would not be where we are at today with our loved ones and helping them move forward in their lives. The only way to help autistic children and adults is to continue to do the research and find appropriate interventions—not just one intervention or therapeutic technique, but multiple options. Therapies are not a one-size fits all situation because what may work for one autistic child/adult may not work for another.
Last updated Thursday, May 26, 2022