I wanted to share some thoughts that I had while we decided if we were going to get a diagnosis for Ruby. While we were doing the early intervention program that helped Ruby with occupational therapy (OT) and speech the OT was certain that Ruby had sensory issues, but felt that she was making so much progress that she thought that she may not have autism. It is important to note that a child with sensory issues may not have a disorder. It only is a disorder if the sensory issues impede the child’s daily life. Like being bothered by tags on a shirt is not a disorder, but being extremely sensitive to sound to the point where you can’t be in crowded places could be. She said, “don’t rush off to get tested.” That was very comforting to us.
Ruby only participated in this program for about 6 months before she turned 3 and aged out. Then she began going to a specialized preschool a few days a week. This was a hard transition for us because now no one was coming to our home to help us know what we should do to encourage Ruby’s development, and let’s be honest, the communication between school and home is not the best. I would usually get a smiley face written on a paper to let me know how she was doing. Not a lot of guidance. We started to see some regression in Ruby’s verbal skills and attention rather than growth and I started to get worried.
My husband and I started to talk about getting a diagnosis. Some of the thoughts I had. I don’t want Ruby to be labeled. Since these diagnoses are based on behavior and are subjective, what if it is wrong? And deep, deep down, I don’t want there to be something for them to find. So I decided to use a life-line and call a friend. My friend has a son who has autism and I talked to her about my fears, my concerns about Ruby’s school, and about a getting a diagnosis. She was very kind, patient, and the most helpful, talked to me about her own experience. One of the most impactful things she said was a diagnosis empowers you to know how to help your child.
When I put this into perspective, I knew that getting Ruby evaluated was the right choice. I had been cautioned that it could be expensive and that some places would give children an autism diagnosis too easily and that it may not be accurate. So I put Ruby on a waiting list for a highly recommended place that I heard would really dig to find the real diagnosis rather than just say it is autism. I wanted to the truth. So after an 8 month wait, we got the call to schedule our first appointment.
So we went to our first appointment. Did I mention that Ruby is extremely afraid of doctors, and this place was a doctors office?! She really just talked to me as Ruby did not talk and didn’t respond to any questions. We talked about Ruby’s strengths and weaknesses and the whole time Ruby was basically climbing all over me. Not a typical behavior of hers, but she was pretty nervous being in the doctors office so understandable. The nurse saw sensory issues with her right off the bat (yes the climbing on me to calm herself down was a sign of sensory processing disorder). I asked her about autism. She felt that Ruby was in the gray area because she did not have any of the big behaviors that are associated with autism (head banging, hand flapping, long tantrums, etc.), but she did score high on the preliminary autism screening that doctors offices give out at the 2 year check up.
So after a few appointments, a more in-depth autism questionnaire for us and her preschool teacher, who is extremely insightful and was part of our journey to get a diagnosis, the doctor came to a conclusion. Ruby has autism and sensory processing disorder.
By the time the official diagnosis came, I was expecting it. Through reading more about autism, and talking with her preschool teacher to help me see that Ruby did have some repetitive behaviors that I had not considered repetitive, it really did seem to fit. It was still somehow hard to hear. Every parent wants their child to be free to develop and interact in the world, and somehow having an official diagnosis made this seem more distant. It is almost like grieving a loss, the loss of a potential future I pictured for her.
After a short grieving period, I began to see how having a diagnosis was actually a great thing for her. First, I was able to do more research on autism, therapies, and ideas I could implement at home. I also did more research on sensory processing disorder, which gave me some much needed insights into how Ruby might be experiencing the world. Another benefit was insurance started covering more therapies for her because of her diagnosis. There has been so much advocating for autism that insurance companies do a pretty good job of supporting therapies to help them grow. Also having something to tell people when they would ask Ruby her name and she would just stare at them, or if she was say running around the petting zoo and wouldn’t stop when they asked her to was actually a relief. And really, people are pretty understanding if they know what is going on.
Another bridge that the diagnosis built was towards state insurance. When we got the diagnosis we lived in Arizona. After the diagnosis we applied for DDD and ALTCS (Arizona’s long-term care insurance). You don’t have to have a diagnosis to be approved for these services, but it sure helps. This was important for us because once we were accepted into ALTCS, they covered all of her private therapy costs (no more co-pays!). They also opened the door for therapists to start coming into our home. With three kids under the age of 5, this was very helpful. ALTCS also covered a communication device for Ruby, which has really helped her communication, but verbal and non-verbal, and allowed us to do social stories for her (more to come about those). And lastly, we were able to have an amazing respite and habilitation worker come in for a few hours every day and spend some one-on-one time with Ruby. Seriously, this was the best. And if we ever wanted to go out, we had a built in babysitter that had a good relationship with Ruby, and just by paying her to watch the other two, we didn’t have to worry about how Ruby would handle us being gone.
Looking back, I wish I would have gotten the diagnosis earlier because I would have been able to get so many more things rolling for her earlier. We can only do what we can. There will always be, “oh I wish I would have done this sooner”, so I try not to beat myself up about it. I just look at what can I do for Ruby today to help her work on skills and to help her smile. Ruby doesn’t need a mom that is filled with guilt, just a mom that is present and is trying. So I will continue to try and to love it.