There is a plethora of information online about autism. This is an attempt to explain what autism is to our family. How we perceive its affects, what symptoms we saw (and overlooked), and treatment options we have tried or heard about. For a more clinical explanation about autism, please visit our links page.
Autism is a social disorder in which it is difficult for a child to make connections with others. Ayden has a difficult time properly interacting with others. We believe it is also a biological disorder. Some research is being done that indicates that genes play a significant role in autism. It is clear that Ayden's brain is not operating the same as the typical brain. He has difficulty with language. Many times the brain images of autistic children differ than images of a typical brain. So in these ways, it seems to be a biological disorder. Finally, I believe it is a physical disorder. The senses of autistic children seem to be different than those of typical children. Many autistic children have sensory issues. Ayden seems to have a need for constant movement. He also has sensitivity to sights and sounds. He may squint his eyes or cover his ears to protect his self from the over stimulating things in his environment.
The first symptoms we overlooked with Ayden could be seen when he was still a baby. He enjoyed bouncing in his Johnny Jumper. Most children would enjoy this for a little while and then cry to let their moms know it was time for something else. Not Ayden! He would bounce endlessly. He would actually bounce himself to sleep.
Even at a year old he had no interest in seeking out the attention of others. We didn't notice this because we always sought to play with him. When we played with him, he laughed and enjoyed our games of peek a boo and itsy bitsy spider. We never noticed that he never came to us and that we always had to initiate contact. We loved his independence.
We also overlooked the fact that he didn't play with his brothers in the way that other one year olds would. He never cried when they took his toy. He would simply go off on his own and find something else. We did not recognize this as a symptom of autism. We enjoyed the fact that he could entertain himself and not let his brothers bother him.
Language was one of our first big concerns. By the age of 18 months, we had only heard him say a handful of words. He used none of them regularly or meaningfully. His older brothers had at least a hundred words they used regularly by 18 months. I did not let this bother me too much, because I knew that both Bryce and Evan were always extremely advanced for their ages. So I just assumed the lack of language was due to the fact that everyone else in the family was talking so much that he didn't need to. My doctor also agreed that it was nothing to be concerned about.
Receptive language was another symptom I should have noticed. Ayden never responded to directions. He did not point, wave, or in any other way show that he understood anything that we said to him.
He seemed to need constant movement. This included rocking back and forth in his highchair, bouncing and jumping, running, swinging, and hand flapping.
Ayden had great eye contact. It didn't occur to us that it was mainly when we were singing to him. This was the symptom that made me wait so long to get him a diagnosis. Everywhere I read symptoms about how autistic kids lack eye contact. So even though I saw other classic symptoms, I tried to deny the facts because he had great eye contact.
Finally at age 2 1/2 I couldn't deny it any longer and we began the process of getting a diagnosis. When he was 2 years and 10 months, our suspicions were confirmed. He was given the diagnosis of Autism Spectrum Disorder.
The following symptoms, are directly from web md
We live in Michigan and sought help for a diagnosis from Project Find. If you do not live in Michigan and need help, please visit our links page for some places to start.
I don't need to reinvent the wheel. There are many sites that discuss all the treatments that are out there right now for autism. There are many treatments and they all cost an arm and a leg. I think that Kyle's Tree House does a great job of showing most of the options out there. I just want to discuss the ones we have chosen for Ayden.
The first treatment we implemented after our diagnosis was a Son-Rise Program. This type of treatment is focused on the social aspects of the diagnosis. Using a common example of a child being stuck in his/her own world, a Son-Rise Program involves joining the child in that world. The idea is that you work with the child on their terms and make it so enjoyable that slowly they want to come into your world.
One of the problems we found with this program was the cost and inconvenience of ongoing training. The beginning was great. We saw some significant results, but we didn't know where to go from there and didn't have the money to find out. They have begun posting webinars on their site. That is a wonderful blessing for people doing a Son-Rise Program. The second problem we had, was that we could not recruit or keep volunteers. We do have one volunteer remaining. Jan is a wonderful person who was willing to help a family she'd never met. This is a great treatment for the right family. I am an introvert and have a hard time connecting with people. If you are the type of mom that has a lot of family and friends who are willing to learn how to work with your child, I believe that this is an excellent treatment. A two week intensive program at the Autism Treatment Center costs $17,000 and there is a two year waiting list!
The next treatment we began and the more effective for Ayden, was ABA (Applied Behavioral Analysis) therapy. To use the same example of a child in his/her own world, ABA would pull them out of their world (kicking and screaming if necessary). ABA is much more structured. You set definite educational goals and you use discrete trials (very repetitive) to help the child achieve your goals. Both treatments use the child's motivation to help them to learn. ABA involves teaching the child to sit at a table and focus on the tasks at hand. Although you do use play and incidental teaching, you must also use hand over hand teaching and prompts/prompt fading. To find out more about these therapies, there are links at our link page.
Other treatments we have tried or would like to try are; special diets, vitamin supplements, sensory integration.
We tried a Gluten Free/Casein Free diet with Ayden. We did not believe it was helpful for him. It has however helped many other autistic children.
Blood tests showed that Ayden has a vitamin B deficiency. We have tried to increase his vitamin B intake naturally. We would love to do vitamin B shots. I have heard that many children have had success with increased language after the shots. We cannot afford the treatment at this time.
There are many treatments for sensory integration that could benefit Ayden. Unfortunately most are very expensive and we cannot afford the cost at this time. Ayden did go to the Children's Therapy Corner in Midland, MI for Speech and Occupational Therapy. The cost is $150 per hour. When our insurance would no longer pay for the services, we had to end that treatment. We saw positive results when we were going there. Ayden still asks for his therapists months later. Other forms of sensory integration that have helped autistic children are in the thousands of dollars.
Finally, we would love to do a formal full time ABA program. Ayden has responded tremendously with me working with him only a few hours per week. Research shows that there is a good chance for recovery for children who receive intensive (30-40 hours per week) ABA therapy. The cost to us would be about $450-$550 per week. The Hope Center (Beaumont Hospital) has a three month intensive program. It costs over $12,000. It is estimated that the cost of treatment for a child with autism is $33,000 per year. Once we raise $5500, I will begin interviews to start an ABA program. Until then, we will continue to rely on prays, our own abilities and the public school system.
Many people want to know how long treatment lasts for autistic children. It depends on the child and the effectiveness of the treatment. Many parents have reduced or eliminated most treatment once their child was mainstreamed into a public school. Our hopes for Ayden, is that he will spend the next two years doing intensive ABA and then be mainstreamed into a kindergarten class when he is 6 years old. If we reach our goals for Ayden, we will no longer hire outside staff to work with Ayden once he is in kindergarten.
