My child has autism- Now what?

Yesterday, I told you the emotional story of how we got an autism diagnosis for Nathan.  That was just the first step in what continues to be a lifelong journey.

When Nathan was a year and a half old, he stopped
making eye contact and talking

For me, one of the hardest parts of hearing the words, "Your child has autism", was figuring out what to do next.  We already had done an early intervention (EI) evaluation, and Nathan was getting speech, special education, occupational therapy (OT) and physical therapy (PT) services.  Our developmental pediatrician who diagnosed Nathan also recommended seeing a neurologist.  It is estimated that as many as one third of people with autism also have epilepsy, we needed to rule out seizures.  Other than that, the doctor said to continue with EI, and come back in a year.

Nathan has always loved reading, he taught himself
to read before he turned 2, his therapists used books as a reward

I made an appointment with a pediatric neurologist, who diagnosed Nathan with hypotonia, or floppy baby syndrome.  This means, Nathan has low muscle tone, and it also explained why he had so much trouble sitting up, crawling and walking.  The neurologist also ordered an electroencephalogram (EEG) to test for seizures.  It came back abnormal, but didn't show any actual seizure activity.  The neurologist gave us a list of symptoms to look for and said to come back if we noticed any seizures, if not, he would see us in 6 months.

Now what???  I started to read everything I could about autism- books, articles, websites, online forums, I mean EVERYTHING!  Many parents were talking about gluten free and casein free (gfcf) diets, saying they had seen improvements in eye contact and speech.  We decided to give it a try, since it wouldn't hurt him, and if we didn't see any change, we could just go back on his regular diet.

I was hearing a lot of great things about gluten free-casein free
diets, we decided to give a try

It takes 2 weeks to get casein out of the body, and 6 weeks to get gluten out.  We started with casein- removing all milk, cheese, yogurt and other milk based products out of his diet.  We didn't see much of an improvement after two weeks.  Then we removed gluten from his diet.  The first few weeks were awful.  He was so sick, vomiting, diarrhea, he was angry all the time and slept a lot.  Then at about the six week mark, something amazing happened, Nathan started talking again- he didn't talk as much as he had before his regression, but he was talking!!!  He also started making eye contact- it was quick and fleeting- but he would look at you, and react if you talked to him!  Nathan's therapists were in shock. They had never seen anything like it.  I know gfcf diets don't work for everyone, but it brought back some of the child we had once known.  (FYI, after a couple of years, we put Nathan back on casein, but, he still refuses to drink milk or eat yogurt, but he likes grilled cheese and cheese on pizza and on rare occasions he will have ice cream.  Eight years later, he still doesn't eat gluten.  Nathan was later diagnosed with celiac disease- my mother and I also have it.  He will never eat gluten again!)

Nathan started going to preschool 2 mornings a week
when he was 2-years-old

I also started to read about Applied Behavioral Analysis (ABA) therapy.  There are lot of really scientific explanations of what this is, but basically, it's an intensive form of therapy where the therapist teaches the child what to do and how to behave in certain situations, and provides rewards for positive behaviors.  The therapist also keeps track of the child's progress on a chart.  For example, to increase eye contact, the therapist will not respond to the child unless he makes eye contact with her.  Then when he does make eye contact, he will get a reward and she will respond. A reward can be a favorite toy or a snack.  She then tracks on the chart how quickly and/or how often he makes eye contact when he wants something.

After reading about this therapy and studies showing positive results, I went back to the county and demanded ABA therapy for our son.  I provided them with a letter from Nathan's neurologist saying he needed it and it was approved.  Just between you and me, I kind of hated ABA.  I couldn't watch it, it made me sick to my stomach.  It felt like Nathan was a dog and his therapist was his trainer.  Was he really learning how to make eye contact, communicate, and play?  Or was he just doing what he thought he needed to do to get a reward?  But, Nathan loved it, he would see his therapist coming down the driveway and go sit at the therapy table in his room and wait to "play" with her.  After a while, I started to see the benefits of ABA.  His eye contact improved significantly and he would ask for things he wanted or needed.  He was really communicating again.

Some therapies were fun for Nathan, especially swimming for OT
and going to the playground for PT

By two and a half-years-old, Nathan got 2 hours of ABA therapy per day, five days a week.  Between ABA, special education, speech, PT and OT, Nathan was getting more than 20 hours of services a week in our home.  He was also going to an integrated preschool 2 mornings a week.  Our lives revolved around Nathan's services, driving him to and from school and he still needed a good nap everyday (poor baby Drew, never got a nap, someone was always coming or going!).  

So, what do you do after you hear the words "Your child has autism"?  Read.  Educate yourself about autism and the services available- and get them for your child.  Don't ask for them, demand them. Don't take no for an answer.  Find a good developmental pediatrician and a neurologist who will back you up and also demand the services.   We hear doctors and experts say all the time, "early intervention is key". Well, take it from me, they're right. If it had not been for all those hours of early intervention services, Nathan would not be where he is today.