In a lot of ways, I feel like my knowledge of child development and autism was so much more, even than other trained professionals, that while it helped me jump the gun on getting him diagnosed, the services he needed just weren’t there.
When I learned I was having a boy I was concerned about autism. Given my genetic history and the fact that boys are more likely to develop it I was concerned. I also knew that there are early warning signs for autism and that the earlier a child gets into treatment the better their prognosis.
I started searching for a pediatrician while I was pregnant and was not impressed when I brought up my concerns about autism. One doctor even told me to pray he doesn’t develop it. Buddy’s pediatrician was assigned to him by the hospital when he was born. When I first addressed my concerns with him he told me I didn’t need to worry because I have a Master’s degree so it was unlikely my child would experience problems. It wasn’t an auspicious beginning, but I didn’t have time to find a new pediatrician between then and the next appointment. When I brought Buddy back, the pediatrician told me he’d done some research, validated my concerns and worked with a plan to monitor Buddy for early symptoms.
Ladies and gentlemen, I had found my pediatrician!
And at first I didn’t have any concerns about Buddy. He smiled when he was one week old. He was affectionate and bonded well. If anything he had to be held constantly and constantly suckled. I am not exaggerating when I say that I nursed him for a minimum of twelve hours a day! I Googled how long nursing on demand takes, and while I saw people respond as much as 8 hours, I’d not seen anyone say 12 or more!
This was Buddy being sensory seeking. He didn’t nurse because he was hungry but because he wanted the oral stimulation. To this day he brushes his teeth every time he goes to the bathroom for a minimum of 10 minutes.
But I just put this down as Buddy being large for his age and needing more food. It wasn’t until he was seventh months that I started noticing he wasn’t doing things such as pointing or waving. And while he had babbled one time when he was 4 months old, he’d never done it since.
He would also do these bizarre hand movement that made him look like he was playing the piano. None of us knew what to make of it.
When he was twelve months he said “doggy” and “kitty”, and then he stopped talking. Considering that there are a lot of reasons that kids have language delays this didn’t concern me. What did concern me was that he wasn’t waving at people, saying “Hi” or “Bye”, or imitating me. He also wouldn’t clap. These are early signs of autism that tend to go unnoticed, and people told me I was overreacting.
When he was 18 months my pediatrician administered the M-CHAT, a screening tool for autism. Buddy barely made it into the risk category. He made it by one question! My pediatrician helped me to get Buddy into Early Childhood Intervention (ECI).
When we went for the evaluation we learned he had even more severe delays that we realized. Now, raising Sissy who does not appear to be on the spectrum I can see this. But because of this I can see how easy it is for a child to appear to be developing typically to the untrained eye and then, once they get to a certain age, the gaps in development becomes so large that it seems they developed autism overnight. In fact, people have asked me if Buddy regressed. He didn’t, it just became more apparent that he wasn’t developing typically.
ECI was a mixed bad. I quickly got frustrated with the speech therapist. I think the problem I ran into was since I was looking for signs I caught his autism earlier than most parents do, and that the speech therapist was not used to working with kids with autism as a result.
The reason therapy was stymied was because Buddy did not imitate (he’s starting to now…sorta kinda). And speech therapy requires that the child imitate the sounds the therapist makes. The therapist decided we should work on teaching him sign language instead, because we could force him to make the hand movements.
Buddy hated being forced. I was worried that therapy would backfire if we tried to force it and refused to do sign language.
In college I was trained in ABA therapy, and I tried doing that with Buddy with little success. He wouldn’t imitate and he didn’t want to perform tasks for a reward. Lately I’ve been reading about DIR/Floortime and similar methods that my husband and I have sort of stumbled upon through trial and error and thinking, “I wish I knew about that then!” But I didn’t, and his speech therapist certainly didn’t.
And there’s where I felt I fell into the trap of having enough knowledge to know very early something was wrong, but finding a lack of services to support us. It’s been incredibly frustrating.
We did have an occupational therapist from ECI who was amazing, so it wasn’t a complete waste.
So, what do I think of Clinton’s proposal to help families with autism? I think they are desperately needed!
If infants are screened and detected at younger ages, not only will parents not be blindsided, but this I think will help combat a lot of the fears about vaccines causing autism. People ask me if I think vaccines caused Buddy’s autism and I tell them he was autistic before he was born! That whole sensory seeking and nursing constantly? Well, in every ultrasound I had of Buddy (and for whatever reason that doctor did them at every visit), from the moment he developed hands he was sucking on them. Even in the womb he was sensory seeking. Buddy was born with autism, it just didn’t become apparent, even to other people (my in-laws, for example, thought I was making a big deal about nothing until the accepted it and finally banded together with me this Christmas), until this year!
The other part of this is making sure that early childhood interventionists are trained in working with babies with autism, and how to get around to barriers to treatment such as not imitating and not caring about rewards.
With Buddy, you have to meet him where he’s at. For instance, if I ask him to name his colors he won’t do it. But I found when helping him play with blocks if I started listing the color of the block we were playing with he would list it with me. After months of this, he would start naming colors in his every day environment. I term this joining with him.
As I’ve blogged about, I’m currently distraught over the lack of support I feel like I’m getting from the school. When I met his teacher, I wanted to focus on Buddy’s strengths, though I did have to mention autism because he wasn’t going to answer her questions. So I said, “This is Buddy, and he has autism and doesn’t talk much, but he’s real good at counting and can count to 20 and knows his colors.”
The teacher replied that they’d have him talking and socializing in a few months.
I introduced Buddy to her in this way because I wanted to focus on his strengths and build on them.
And she gave me an empty promise in return. And empty, unrealistic promise. While Buddy has made progress verbally, he’s not talking and speaking like a typical five year old, and it was cruel of her to promise it.
So making sure that teachers are trained on what is and isn’t typical for an autistic child, especially if they are special education teachers, it vital. And definitely could use the insurance coverage of effective therapies for children with autism.
I hope something comes of this, or this signals a shift in how we see and work with children with autism. Unfortunately, it’s not going to do much to help me in the here and now.