Autism spectrum disorders (ASDs) are a group of neurodevelopmental disorders that are characterized by difficulties with social interaction, communication and behaviour.
According to data provided by the Centers for Disease Control and Prevention about 1 in 88 children in the US has been identified with an ASD.
Autism is a very expensive disorder costing our society upwards of $35 billion in direct (both medical and nonmedical) and indirect costs to care for all individuals diagnosed each year over their lifetimes.1
My youngest child was diagnosed with moderate to severe autism when he was three years old. I did not agree with the diagnosis and felt that the professionals we were dealing with were “hyper-focused” on autism red flags. I am not a health care professional and I am also aware of that as a parent, there was the possibility that I was using denial as a mechanism to cope with the diagnosis, but I was still not 100% accepting of the diagnosis.
I was encouraged to learn more about autism and start to look at possible therapies. And since early intervention is believed to be so critical and waiting lists for treatment are long — I was urged to do as much as possible, IMMEDIATELY!
One of the first things I did was call a local Autism Therapy Clinic to get information about their program. Here is a summary of the call based on my recollection.
Clinic: “Hello, Autism Therapy Clinic.”
Me: “Oh, hello. My son has just received an autism diagnosis and I wanted to learn more about your services.”
Clinic person: “Well, it looks like we will have an opening in the next few months. We offer… (Insert therapy options, hours, clinical team information here.) Would you like to come in and see the center?”
Me: “First, can you tell me how much your services cost?”
Clinic person: “Well it doesn’t work that way.”
Me: “Oh! How does it work?”
Clinic person: “Well, you tell us how much you HAVE and we tell you what you can GET.”
~~~ stunned silence ~~~
Me: “What happens if we do not HAVE?”
Clinic person: “In cases like that, we suggest that parents call their bank and arrange for a loan, line of credit or second mortgage and borrow as much as they can.”
I don’t remember any of the conversation after this point. I may have fainted, dropped the phone or hung up on the nice lady at the clinic. That was our introduction to the Autism Economy, part of that $35 billion mentioned above.
Anyhow, 7 years have passed since that phone call and if I could travel back through time and have a calm conversation with my past self, here is what I would say…
- First and foremost, you are the parent and you have your child’s best interests at heart. You know more about your child than anyone else. Trust your instincts. There is very little about the situation that is black or white, it is mostly made up of various shades of gray.
- You NEVER need to make a major decision right NOW if you are not ready. If you are certain then by all means, go ahead. If you have any doubts, taking some time to think things over, will not be the end of the world.
- There is still so much unknown about autism and new theories are emerging daily. Remain both hopeful and sceptical of new ideas.
- Reach out to local organizations that can help you navigate the special needs world. They will have resources and information that can help. It is important to understand what services and funding that are available and find references for service providers. They can also direct you to government agencies that can provide information about tax considerations and programs.
- Contact your employer’s medical benefit provider to see what coverage you may be eligible for.
- There are some amazing people who have chosen to work with people in the special needs community. Appreciate them. Just like anywhere else though, there are also those that have chosen the work in the wrong profession. Hopefully you will not encounter too many of these people, but if you do refer to item #1 on the list again and move on.
- Cherish your children because they are a precious gift— and they grow up so darn fast!
P.S. Autism is crowded.