Andrea's son is 9 years old
Andrea's son turned 9 this year but was diagnosed with autism at 2 1/2. She's been married for 15 years and lives in Queens, New York. When her son started kindergarten, she changed careers and began working as an assistant teacher for a local preschool. The hours were more manageable, allowing her to be available after school for homework help, therapy appointments, and activities.
She tries her best to be a resource now for other parents as they learn that their children are on the spectrum ... sharing with them the things other parents had shared with her when she needed it the most.
Andrea talks about her experiences of discovery and how she copes on an everyday basis.
How old was your son when you first suspected he might have autism? What were those initial signs?
We came to our son's diagnosis in an unexpected way. At the age of 2, he and I were taking a Mommy and Me gymnastics class, and the instructors pointed out that he walked with his feet turned outward. He had also been a late walker as well as late with some other physical milestones. We hadn't thought too much of it at the time because he'd been born a month premature and at a low birth weight. We were told he'd probably be a bit delayed with his milestones for the first year or two. Also, my husband and I aren't athletic, so we joked about how gross motor skills may not be our son's strength, either. But the gymnastics teachers suggested we look into an Early Intervention evaluation. Perhaps they noticed more that wasn't on par with his peers in the class. I did start to become aware that his speech acquisition seemed to be slower than some other children his age.
We approached the pediatrician at our next well-visit about a referral to Early Intervention. The doctor told us he may be "a little developmentally delayed" -- our son had no problem walking to the door in the doctor's office and saying, "Door, jacket, leave" -- and agreed to the referral.
As part of the Early Intervention evaluation process, we had several evaluators come to our home, each with a different specialty. My son was so terrified of descending a flight of stairs that the physical therapist evaluator asked if he'd ever fallen down a flight of stairs (he hadn't) because he seemed to be experiencing trauma about it. But it was the educational evaluator who noticed the most red flags, simply by watching him play and interact with me (and largely avoid her). He was very repetitive in his play, doing the same puzzle over and over, for example, always with the same piece first and the same piece last. He lacked imaginary play, and we discovered much later when viewing home videos with a new perspective, he didn't refer to us to try to understand his world. He analyzed his toys more than shared them, even with us.
That series of evaluations caused a domino effect. We thought we'd be granted physical therapy and maybe a little speech therapy. Instead, we got a call from the Early Intervention agency and a referral to a developmental pediatrician. That doctor was the one who gave him the diagnosis of being on the autism spectrum, when he was 2 1/2 years old.
In those first moments when you found out your child's diagnosis, how did you react? And how did that reaction change over time?
By the time the doctor said those words, we'd been clued in to what she would say, so I wasn't shocked. My sister and brother-in-law (who had been a special-education teacher) came over one day before the doctor's visit. My brother-in-law had done research on some of the red flags raised during our son's evaluations, spoke to some experts he was in contact with, and came up with the same theory, PDD. They aimed to break it to us gently before we saw the doctor so we'd be prepared. My husband had a negative reaction initially, very much in denial. I was just stunned and confused. I wondered how that could be right, as a friend's son, a year older than ours, was diagnosed with PDD-NOS but had no speech yet, ate Play-Doh, and at the time, played with his own feces. This didn't seem like it could be the same diagnosis because he was much more delayed than our son, who also didn't show those particular behaviors.
Now, of course, we understand that the autism spectrum is just that, a spectrum, and that, as the saying goes, if you've met one person with autism, then you've met exactly one person with autism. There's a broad range of symptoms and behaviors. One theory by Dr. Steven Gutstein, who developed RDI (Relationship Development Intervention), is that the main commonality among those with autism anywhere on the spectrum is a neurological breakdown during late babyhood and early toddler-hood, where the child doesn't meaningfully look at the parent as a guide to understand what his/her surroundings mean, then trying things on his/her own with parental approval.
My reaction, as well as my husband's, definitely changed over time. Once we got that diagnosis, the goal quickly became to get our son the help he needed. We started looking at Early Intervention schools, and I attended an ABA seminar. The biggest change we've gone through over the years is that initially, we thought this could be fixed. We'd get him the right therapies, the right schools, and lo and behold, he'd outgrow it in a few years. Now we see that this is a lifelong process. Our son is very capable in lots of areas, but other aspects of his life are still a daily challenge. The work doesn't magically end.
What's his exact diagnosis? And what does that mean in laymen terms?
Our son's original diagnosis was that "he has an autism spectrum disorder." When he was 5 1/2, this was changed more specifically to "high-functioning autism." He doesn't quite have Asperger's Syndrome or what people view as Asperger's. He doesn't always speak in paragraphs and doesn't test as having a high IQ. He has average skills but is highly functional. He has a genuine interest in people but isn't always comfortable interacting with them. He actually often has a very happy, friendly demeanor. If he gets upset, it's often due to frustration with his own limitations.
What are three things you wish someone would've told you about autism that you had to learn on your own?
- First, again, that there's no "quick fix." That initial seminar I went to, the first of many, was about ABA. The presenter gave an example of working with a 16-year-old. I thought to myself, Why on earth is someone who's 16 still getting ABA? I honestly believed that the therapies would be over long before that age. My husband figured our son would be able to attend a general-education class at the elementary school around the corner by around second grade. We believed that if we worked hard with him for a few years, this would all be behind us and we could get on with our lives the way we had planned. In time, we learned that we had to alter our vision of what we wanted and hoped for our son growing up, that it may not be exactly what we had imagined, but our family life could still be good and his childhood could still be happy.
- Hindsight is 20/20. Our son was our first child, our first experience with parenting, and we thought that everything he did early on was genius or just a sign of his unique personality. I wish that there had been more awareness about autism back when he was a baby and early toddler. Looking back at home videos and in my own memory, I now see signs of it long before he was diagnosed. It isn't productive, but occasionally I wonder if he'd have progressed that much further had I realized that something wasn't "right" a full year earlier, when he was between 1 and 1 1/2 instead of between 2 and 2 1/2. Even just a few years later, there seemed to be a lot more pubic awareness about autism than there was in the early 2000s.
- I also wish I had listened to my gut more instead of blindly agreeing with school administrators in his early-elementary school years. Now, if you were to ask those administrators, they wouldn't think I'd gone along with anything they said. I was often questioning and challenging their ways. However, in my hope that he could remain in one particular inclusion program, I didn't come out and fight the way I should have. It wasn't enough. I gave in too much, going along with the program, believing in the administrators' ultimate expertise. I should've had more faith in the fact that a child's parents are the best and often only experts about that child, no matter what someone's degrees state.
What or who has been your greatest resource for information and support during this time?
Fortunately, my son's first two schools, the Early Intervention center and the mainstream preschool he attended with an aide, provided great information and support. The Early Intervention center perhaps provided more information, and the preschool more support, simply because autism wasn't their specialty, but they were open to working with children with special needs. These first three years of my son's education provided a wonderful foundation, both for him in terms of learning and for us in terms of understanding how to live with autism. While my son was in preschool, I also learned about a wonderful recreation program for preschoolers with developmental disabilities at the Samuel Field Y in Queens. Their programs and support are a part of our lives to this day. For my son, they've provided recreation programs, opportunities to experience horseback riding, and an innovative weekly social skills group, where he has made some great friends. For me, they supplement and expand my knowledge with support groups, seminars, lectures, and workshops. The Y has been an invaluable resource.
We're also fortunate to have found a supportive school, LearningSpring School in Manhattan, where my son once again feels comfortable and is gaining back his confidence after being misplaced in public school. And I find lots of interesting articles on AHA's email list (Advocates for Individuals With High-Functioning Autism). I attended their support group for a while as well.
I've found that in terms of support, what goes around, comes around. When my son was newly diagnosed, I sought advice from other parents in the same situation. Now that we've been living with autism for several years, I'm happy to provide that same information and support to other parents with younger kids. We're a community that helps each other. I've also been involved in recognizing the need for an evaluation in a handful of my students at the preschool over the past few years (though not always because of a suspected ASD).
What's been the most challenging part of dealing with a child with autism?
Perhaps the most challenging part has been that it's been very difficult to just drop off my child at someone's house and let him play with his friends, as so many parents of typical children often do. For one thing, he'd be more likely to play with the friends' toys, not with the friends, so there would be no social interaction without my (or another parent's) facilitation. I also find that I'm more involved with his activities even at home, because if left alone too long, his play patterns will get rote and lean toward self-stimulation. This applies to homework, piano practice, and downtime. I'm almost always keeping an eye or ear on him to make sure he's staying on track and not falling into a stimming pattern.
Tell us something that makes your child special or unique.
My son is gifted musically. He's been taking piano lessons from a neighborhood music school since he was 6 1/2 and has taken to it naturally. His piano teacher thinks he has perfect pitch. This was evident when he was younger and would ask me to sing a song we heard once or twice. I'd attempt to do so to the best of my memory and ability, and then, thinking I was joking, he'd tell me to "now sing it right!" He seems to remember every song he's ever heard and can tell which song is playing by the first note or two. He'd be an amazing contestant on that old game show "Name That Tune." He now makes his own play lists on iTunes and shares CDs with his friends. He's become adept at putting songs in an order that go well together, as a DJ would do. Music is a source of joy, order, and tranquility for him, so we try to expose him to all sorts. He attends both classical and kids' pop concerts (the kids' independent music scene, "kindie," supported by such radio podcasts as Spare the Rock, Spoil the Child), and has an extensive CD collection that he maintains in alphabetical order. This special interest gives him a sense of purpose.
Finally, the debate around the cause(s) of autism is very heated right now. What do you think causes autism?
That's the million-dollar question, isn't it? I do believe there's a genetic foundation to autism. If certain genes are present, then it's more likely to occur. I can definitely see where members of both our families have "a little of this, a little of that" when it comes to related tendencies, but not enough symptoms to be diagnosable. Looking at all the various quirks, I joke that my poor child never stood a chance. That said, I'm not sure if environmental conditions, whether internal or external, trigger those genes to act, or if it's truly extreme genetic tendencies. Does a family history of combined "issues" make a child with autism more likely? Maybe. But I think that gastrointestinal issues, food sensitivities, vaccine and/or immune system sensitivities, and the influx of factory farming over the past several decades are all areas that are worthy of study for possible connections as well. Hopefully, we'll have an answer in my lifetime.