Like most parents the blow of hearing that your child is Autistic is the most devastating thing that you can hear. Alex was not quite 18 months old when we got this news. We had taken him to be evaluated for an eating issue and come away instead with an autism diagnosis.
I am glad that Alex was diagnosed early. I am sad to say we like many parents then began life trying to figure out how to find the right treatment for our son. We heard over and over how lucky we were to have an early diagnosis but unfortunately by time we navigated the sea of options for deciding on therapies we had already lost precious time.
Behavioral Therapy (ABA)
Behavior Therapy is based on the concept of reinforcing good behaviors. A good behaviorist will be able to draw upon a number of different types of therapies (Floor time, ABA, etc...). We were very lucky and have had access to a Behaviorist who has run Alex's program since he was two. She has wealth of experience and has been willing to be creative and draw upon concepts from different therapies to try and help Alex speed his growth and development.
FloorTime
The first place that Alex received therapy was at the Hearing & Speech institute. The therapy was twice a week for a little over an hour. Parent had homework. The program is designed to accelerate child and parent through learning how to interact in a therapeutic way. The concept is that the parent/care giver will provide the bulk of the therapy.
This is a great concept. Alex responded while in treatment and declined the months after the program ended. FloorTime is great. The fatal flaw from my point of view is that the number of hours a child needs to receive of concentrated therapy. Approx 30-40 or more hours of week. Not practical for a family alone to do.
It is a good idea however to go through some type of training as a parent so that whatever program you start you will no how to reinforce the therapy with your own interactions. Floor time therapy training did this for us. It also gave us a first glimpse at how much therapy Alex was going to need.
HippoTherapy
Alex loves animals and really responds interactively to them. So when Alex was about 2.5 years old we started taking him to Hippotherapy. This is occupational therapy performed while riding a horse. Many autistic children have poor motor planning, sensitivity, stiffness of gate, etc... Hippotherapy helps with this. Alex was riding the horse for the first time during and evaluation the therapist laid his torso over the horse cross wise while the horse walked. She did this specifically to stimulate the his respiratory diaphragm. The interesting thing is that this movement encouraged Alex to start trying to use his voice. He was speaking enough by the seconded session that he no longer had to use had movements to indicate when he wanted the horse to go. Instead he would say "GO." I know its only one word. But when you have trouble using even single words for more than labeling this is a huge accomplishment to occur in just two weeks.
Socialization
When Alex was a baby I took him to Gymboree. A type of baby & mommy playgroup. I wanted to make sure he had plenty of chance to socialize. This was before his diagnosis. The first winter he and his cousin became very sick so i pulled him out of Gymboree. It was spring before we started the next session. However, when we started class I noticed he seemed a little behind. So we worked hard and by the end of the session he was acting just like all the other toddlers.
When Alex was diagnosed I tried keeping him in Gymboree but a combination of factors made it difficult. My job changed and that winter the vicious colds came back and things just were not clean enough at Gymboree Alex was getting too many colds and was always sick (I later learned his immune system was compromised)
I did start looking for other socialization options and was disappointed to find out that the only options for a two year old were daycare and Gymboree.
When Alex turned three he went to early intervention with other autistic children. This was a good option but did not provide the positive roles models of typical children. He almost seemed to stagnate this year in growth. The speech just did not come along the way you would anticipate for a child in 30 plus hours of therapy. By far our hardest year.
However, the following year Alex was enrolled in a regular preschool half time with a Shadow (a therapist that is focused on helping Alex stay with the class). This was the year of profound growth. By the end of the year Alex was speaking in 3-4 word combinations and initiating some social interactions and somewhat typical play routines.
Next year we are holding Alex out of Kindergarten. He just is not ready for a regular school environment and he desperately needs regular kids instead of other disabled kids to interact with. We have great hopes for this next year.
Speech
Speech for Alex so far has been focused on how he eats his food and forms his lips or moves his tongue. Most therapies have been in the form of consultation with much work to be done by the parents.
We are now looking at a new speech path who might be able to provide some additional therapies around enunciation and whispering.
Food/Diet & Supplements
Our path down the road of autism all started with a trip to the doctor because of Alex's eating issues. The doctor who diagnosed him early however wanted to focus on the autism and did not want to discuss the food issues. It was only after persistence that she started exploring reflux, and then dairy intolerance and eventually that he be check for celiac's disease.
This was a year after I had brought up the idea of trying a GFCF diet. At which point she was very clear in her belief that this was not an issue for Alex.
A year later she was recommending we cut back on therapy and have Alex tested for celiac's. It was about this time exactly that we fired her and went to OHSU and got into see a Gastroenterologist. It was at this time that we were able to put a name to Alex's eat problems beyond texture sensitivities. Alex has Eosinophilic Esophagitis. The recommended treatment for Eosinophilic Esophagitis is modified diet and eventually steroid treatment if it can not be handled with food and diet.
Like most children of Autism Alex is on a very strict Gluten Free, Apple Free, Casein Free, Legume Free diet. He has more than 20 level three identified allergies that include common foods like tomatoes, peas, garlic, soy, corn, oats, rice, etc...
Alex still has a Buddha belly despite is altered diet and supplements. However, he's healthy and less constipated and more comfortable. Maybe someday he will grow out of his allergies. For now I am happy to have him not eating baby food.
