Yesterday the WORLD celebrated Autism Awareness Day; the rest of the month those of us in the United States will continue to work to spread awareness and acceptance of autism and the struggles that individuals and their families face when they receive the diagnosis. Between our 2 children, we have received a lot of diagnosis over the years and I won’t even try to quantify which were/are worse or better than others. I will say though that Caden’s autism opened a flood gate of co-existing conditions including sensory processing disorder, a feeding aversion, tongue thrust, and speech articulation difficulties. We didn’t get one diagnosis; we got the full deluxe package.
While we had been dealing with specialists for years and all of the tests and appointments that go along with those doctors it wasn’t really anything compared to being told we needed to spend 40 or more hours per week each and every week in speech therapy, occupational therapy, physical therapy, and social or play therapies. While we eventually modified the schedule to work with our lives we generally have something every day. On Mondays we usually have speech therapy at the hospital. On Tuesdays Caden will be starting Miracle League Baseball. Wednesdays he takes a swimming class to teach him to swim as well as work on some sensory challenges with water. Thursdays he does an OT play therapy clinic and Fridays he takes gymnastics to work on balance and coordination issues and then he meets with his peer mentor to work on community and social issues. On Saturdays he usually swims with his peer mentor and will have Miracle League games when he and his sister aren’t at the hospital for their in-hospital infusions every 3-4 weeks. At school he has speech therapy twice a week, works on life skills and occupational and physical therapy issues. At home we work on speech therapy, occupational therapy, life skills, and social skills every day.
Therapies aren’t cheap and they aren’t always easy to find. Our insurance hasn’t exactly been supportive of the process (See Do It Yourself Speech Therapy) even though Wisconsin has mandatory autism therapy coverage. For the first year we lived in the area insurance wouldn’t cover speech therapy at all. Then the one and only place we can go for coverage lost a speech therapist and we couldn’t get an appointment for month. After a lot of begging we were able to get approval for 16 out of network visits. Those have since expired and we learned today that our insurance company is confused. Yep you read that right. They are confused. They said Caden has “too many diagnoses” and so they aren’t authorizing any further speech therapy appointments until he has a new evaluation. Thankfully the evaluation is only for speech but I’m not sure how insurance experts are so clueless. Even those who don’t know a lot about autism know that speech challenges are common. Most even understand that special needs children usually have more than one “condition.” Maybe it is just a misunderstanding but I think this is most likely yet another attempt by our insurance company to avoid paying autism benefits. In any case it means that we’ll be back on our own to coverage speech until the evaluation process is complete and we can only hope that the therapist makes the connection between autism and Caden’s speech challenges. We can also hope that the process is quick because we noticed a lot of regression when our therapy lapsed before due to insurance’s lack of coverage.
This leads to my point, yes I had an actual point to this blog. While we are working on educating the general public this month, we also need to make sure that we are educating professionals. We can’t assume that first responders know how to deal with someone on the spectrum when there is an emergency and we can’t assume that medical personnel understand autism (disturbing example but we recently had a medical professional perform a procedure on Caden that we didn’t know much about. Afterward we found out that numbing spray is commonly used but when we inquired as to why it wasn’t with Caden, this specialist at Mayo replied that kids with autism don’t feel pain……..). We need to recognize that educators aren’t specifically trained to work with autism and may not be familiar with what our kids can accomplish or what they need in order to be successful (another disturbing example: we have a member of our IEP team who still doesn’t understand that we want Caden to learn ALL of the letters in the alphabet and that we believe that is entirely possible). We need to be aware that the people making decisions for our children (insurance companies, legislators, etc.) may not understand autism or its complexities. Those who do know autism may not understand the spectrum nature of the disorder or the variances that exist between individuals. In other words we need to make sure that we cast a wide net with our awareness and acceptance campaigns this month.
Today’s experience has demonstrated to me that writing a blog, talking to some classrooms, and promoting awareness/acceptance on social networks isn’t enough. So I am committing to writing letters, sending emails, and making phone calls to professional offices/staff around me as well as to my state and federal legislators. If awareness and acceptance is going to be successful we need to work at ALL levels of society, not just the general public. In a nutshell, if you get the chance to spread education please take that chance or feel free to pass along my blog or contact information. I’m more than happy to share our experiences and knowledge of life on the spectrum with anyone and everyone willing to listen. After all our kids deserve nothing less!