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Autism: A Mother Looks at Diagnosis

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Autism: A Mother Looks at DiagnosisThere was no one moment when we found out that Andrew had autism. Maybe if we had been more in denial, there would have been some shock at the moment when the psychologist said to us, "I don't think he has autism....I know it," but, honestly, it wasn't entirely a surprise. It was awful news, and we didn't want to hear it, but we saw it coming.

Andrew was two and a half when we got the official diagnosis. We had known for a while that he was different from other kids. He didn't talk, and he was socially withdrawn. At first – and for a long time – I just thought I was a bad mother. I wondered what I was doing that made my kid so much weepier and clingier than the other kids, so insistent on staying in my lap, so unwilling to play with the other kids. He was beautiful and healthy and had crawled, sat up, and walked exactly when he was supposed to. He knew his letters and could do challenging puzzles. That meant that his oddness and his nervousness were the result of bad parenting, right? What was I doing wrong? Did I coddle him too much, hold him too much, let him watch TV too much? He was my firstborn – at that point still my only child – and being a mother was a new and bewildering experience.

But the language thing – surely that couldn't be my fault? I talked to him all the time, repeated back his babbling sounds, did everything parents are supposed to do to encourage language development. And still he wasn't talking.

Was I a bad mother, or was there something seriously wrong with him? I wasn't even sure which one I was rooting for. I just wished he'd start acting normal.

The Pediatrician Gets Involved
I remember Andrew's two-year checkup, because it was the first time his delayed language came up as an issue. Early in the appointment, I had accidentally dropped something that rolled under the chair, and Andrew leaned over to see where the object had gone. The pediatrician said at the end of the appointment that he was concerned Andrew still wasn't talking, given how "verbal" his parents were (i.e., we talked a lot), but then he said that he was reassured by the "appropriateness" of Andrew's interest in the dropped object. The doctor said he just wasn't sure whether there was a problem there or not, so he left the decision of whether to see a speech pathologist up to us.

I was wildly relieved to hear someone I liked and trusted say that he didn't see anything obviously wrong with Andrew, apart from a minor speech delay – so relieved that I ignored the little voice in my head that was saying, "But I know he's different from other kids." The pediatrician was an expert, right? And he wasn't particularly worried? Great. I wanted so badly to believe that there wasn't anything really wrong with Andrew that I didn't acknowledge the fact that I spent a lot more time with Andrew than the doctor was able to, and I just ran out of there as fast as I could. But six months later, at the next checkup, the pediatrician admitted he was now concerned about Andrew's lack of speech and recommended we take him to a speech therapist named Roberta Poster.

So we did. We watched Roberta get to know Andrew and hoped she'd tell us that we were being silly, that he was perfectly normal, that we should just go home and enjoy him and he'd be fine.

Page 2She didn't say anything like that, just set a regular weekly appointment for Andrew and suggested we play some games with him to heighten his social interaction.

At a subsequent session, when Roberta said to us, "Do you have any guesses about what's going on here?" I actually muttered something about how maybe it could be autism – hoping, I guess, that she would adamantly disagree with me. I mean, it wasn't like it hadn't crossed my mind.

And she said, carefully, "I'm not a diagnostician, but if I had to make a guess, I'd say, yes, his behaviors fall somewhere on the autism spectrum."

If step one was our sneaking little fear that something was seriously wrong with our child, then step two was hearing a professional say that maybe there was something to our sneaking little fear. We decided we needed to know for sure and took Andrew to see Dr. B.J. Freeman at UCLA, and she said her thing about knowing for sure that he had autism.

And that was step three: Utter and Complete Confirmation of Our Worst Fear.

Talk to Him
I come from an unemotional family. People don't cry or say, "I love you," and they downplay big moments. So I thought I had to be cool about this. Act like it was no huge deal. Do the research, call some experts, fix my kid. Breaking down would just waste everyone's time. That first day, Rob and I were both very calm. We asked B.J. some questions, then went home and vowed to go to the bookstore the next day to buy some books on autism. We discussed it all fairly dispassionately.

But that night, I rocked our younger son to sleep and, alone with the sleeping baby in the dark, finally allowed myself to sob. My beautiful little boy had autism. His future was dark and awful. I loved him, but I couldn't save him from this. In my whole sheltered, charmed life, nothing had ever hurt this much.

Months later, I found out Rob did the same thing – snuck off somewhere by himself to cry. I don't know why we didn't cry together. We should have. It took us almost a year to recover from the news, a year that almost destroyed our marriage, because we both chose to hide our misery instead of share it.

When I talk to people now who've just had a child diagnosed with any kind of special needs, one of the first things I say is, "Talk to each other about how sad you are." You may think you need to be brave for your spouse's sake, but putting on a brave front doesn't help anyone. You both need to mourn, and you need to mourn together. You're the only two people in the world who are feeling the same thing at that moment. You were handed the rawest, lousiest, most piece-of-shit news parents can get – at least let it pull you closer together instead of farther apart.

Telling People
You should, you know. Tell people. You don't have to walk up to strangers on the street or anything, but confide in the people who love you. That was one thing we did right: we told our families and our friends right away. First we called them, and then we copied a good, comprehensive article someone wrote about autism and annotated it with specifics about Andrew, and we mailed it out to everyone we knew. (You could do the same thing with sections from this book, by the way.)

None of our good friends pulled away from us because our kid had autism. Just the opposite – our friends and families rallied around us in amazing ways and have continued to cheer Andrew's progress on year after year.

Page 3In all honesty, telling people what we were going through only made our lives easier. Before then, we worried that Andrew's occasionally aberrant behavior was off-putting. But once he had a formal diagnosis, everyone cut us a lot of slack, and instead of wondering what the hell was wrong with us as parents, most people we knew admitted to a newfound respect for us for dealing with so much.

Real friends don't love you more for being successful or less for having problems. If anything, it works the opposite way – we're all so busy that sometimes we forget to stay in touch with friends when everything's fine for them, but we rush forward when they need us. Now is the time to take advantage of that. Talk your friends' ears off, complain, bitch and moan to them about how miserable you are, and if they should offer to help out, let them. You're dealing with a huge challenge – take advantage of every minor plus it has to offer.

What People Say
I know I said I was glad I told people, but I have to admit that I was horrible about judging everything said to me in response back then. I was hurting all over, and however calm and rational I may have sounded, inside I was quivering with the expectation of being hurt more. Let me give you some examples of the innocuous things people said and how I overreacted to them.

There were the people who jumped a little too eagerly at the news, in my opinion – "Oh, well, THAT explains it. I mean, it was clear something was going on...." That reaction always pissed me off. Are you telling me my kid always looked and acted weird to you? You never said anything to me, but now you're telling me you were sitting there JUDGING us all the time?

(Remember, I wasn't being rational – I was being emotional. Also remember I didn't say any of this out loud. Thank goodness.)

Another group went for reassurance. "Oh, really? Well, I'm sure in a few years he'll be fine." Yeah? How do you know that? The experts we're consulting don't know what lies in Andrew's future, but you're so incredibly clairvoyant you do? Give me a break.

Sometimes people would try to act like it was no big deal, that they themselves went through something similar with their totally normal kids and came out the other side. "The early years are hard for all kids," they'd say. "We were so worried when our kid was three and didn't play catch, and now look – he's captain of the softball team!" Wait a second – was your kid diagnosed with autism? Excuse me, but was your kid diagnosed with autism? WAS HE DIAGNOSED WITH AUTISM? Because, if he wasn't, I don't really want to hear about your experiences.

I knew that those who expressed sympathy meant well – "Oh, how awful! I'm so sorry for you. You must be overwhelmed," etc. The problem was that, at that emotional point in my life, they only made me feel worse. My son – my gorgeous, bright, loving little boy – had turned into something so awful that people pitied me for having him. That sucked. (Later, I grew to kind of enjoy the pity and sympathy. But that was later.)

Worst of all were the people who questioned the diagnosis without any medical or neurological information to back up their challenge: "Are they sure? Because he looks fine to me. Sometimes doctors just SAY these things because it's what they like to say. I just don't believe it." You don't, huh? Did it ever occur to you that we didn't particularly want to believe it, either? That we ran home to read everything we could about autism only to discover, with a sick stomach and heart, that Andrew had pretty much EVERY SINGLE SYMPTOM of your basic classic autism? Self-stimulation? Check. Social delays? Check. Language delays? Check. Inability to make eye contact? Check. Inability to point to something he wants? Check. Inability to follow simple directions? Check. And so on. We're telling you our kid has autism because we've done the research and know it's true. So please don't start second-guessing us or the experts we trust.

Page 4The Point of All This
I realize I've gone on kind of at length about how easily I slipped into feeling offended at that time, but it's for a reason: I want to make it clear how incredibly fragile and wounded the diagnosis had left me.

The truth was, of course, that every friend and relative I spoke to was kind and sympathetic. They all offered help and support. I just couldn't see it, because I was one raw gaping wound, an exposed nerve, a total wreck.

You are, you know, when you get that diagnosis. You're a wreck. There's this huge thing in your life that wasn't there before. It sits there looking at you, and you try not to spend all your time thinking about it, but it just takes up too much space. You can't not think about it all the time.

The worst is in the middle of the night, when you lie awake wondering what the future holds for your kid. You want to be positive, but you just keep coming back to Dustin Hoffman in Rain Man, with his institutionalization and staccato speech and no social life and just this awful bleak nothing of a future.

Was that going to be my son? I'd never seen an adult with autism in real life. Was that because they all ended up in institutions? I honestly didn't know. Say Andrew did have to be institutionalized one day. Would we ever be able to save up enough money to keep him in a good institution for the rest of his life? Or would he end up in a snake pit, beaten and tortured and starved into some sort of brain-dead submission? What about his little newborn brother – would he have to work hard his whole life to support his brother in an institution?

Which led, of course, to a far worse thought – what if his baby brother had autism, too? Could I ever survive two diagnoses?

Middle-of-the-night anxieties, all of these, but sometimes the morning isn't all that much better, because you wake up and there's so much still to deal with: the therapies you have to drive to – and have you chosen the right ones? – the kids who say mean things at your son's school, the school parents who don't talk to you because your kid is weird and they think you're a bad parent, the baby you adore but never have any time to play with because your other kid needs so much of your attention....

Man, it's hard. If you're going through it now, you know how hard it is.

But know this, too:

It gets better.

Getting Better All the Time
Not long ago, when Andrew was ten, my husband and I went away overnight without the four kids, for the first time in ages. We stayed at a small hotel in Malibu, and as we walked along the beach that evening, we held hands and fantasized about retiring to a small cottage near the beach one day, just the two of us, when the kids were all grown up and on their own.

It was a nice dream. And hours later, it suddenly hit me – we had stopped worrying about Andrew's future.

For years, any discussion about the future was tempered by the nagging fear that we might still have to take care of Andrew, that he might be living with us or, worse, in an expensive institution. But gradually, as Andrew's skills grew and he started to catch up to his peers in most areas, that concern slowly faded away. Somehow, the thought, "He'll probably need us to always take care of him" became "Of course he'll be an independent adult."

Admittedly, no one knows what the future holds, and it's possible that any one of our kids might still be living with us into his or her forties (hey, it happens). But the fear is gone, and the future looks pretty bright at the moment.

Page 5How Did We Get from There to Here?
The short answer is interventions. The work we did with Andrew improved his symptoms and raised our spirits. Activity brings hope. Not doing anything because you don't know what to do – that's what brings on the bone-deadening "Why us?" kind of depression.

How did we know what to do? We didn't, at first, and that was definitely the darkest time. Fortunately for us, by the time we got the actual diagnosis of autism, Andrew was already seeing Roberta Poster, and she was a fantastic speech therapist. She referred us to Dr. Freeman, who referred us to Wayne Tashjian, a brilliant behavioral therapist (that is, someone who, like Dr. Koegel, approaches the child from a behavioral standpoint and uses positive reinforcement to improve behaviors and teach age-appropriate skills), and also to an occupational therapist and, over time, a recreational therapist and a tutor (although Andrew was a good student, he did need help in certain areas that required more sophisticated verbal skills than he had yet acquired, like word problems or reading comprehension).

All of this was expensive. We paid for some of it, got our insurance to pay for a few things, and eventually discovered that our public school system could be called upon to finance a part of it, as well.

Good referrals led to more good referrals. We asked the experts we trusted, and as we met more and more parents of children with autism, we shared names and compared experiences. Not everything panned out equally well – for example, the same mother who gave us the name of an amazing music therapist who developed Andrew's love for song, rhythm, and playing the piano also gave us the name of a self-styled "computer therapist," whose services I found a complete waste of time.

You sift through your choices. You trust your gut.

And when Andrew was in preschool, a friend who had two sons with autism told us about this amazing clinic she'd discovered in Santa Barbara, run by a husband-and-wife team. She said their approach, which taught family-based interventions that focused on specific important areas, was doing wonders with everyone who went there. We met with Dr. Lynn Koegel as soon as we could get an appointment, and she taught us that virtually all interventions could be integrated into our daily lives, and that leading the most normal lives possible was the best therapy for Andrew and for the entire family.

We were already working with some truly extraordinary people, and we shared Dr. Koegel's suggestions with everyone, so we could integrate them consistently into our daily lives. Dr. Koegel's advice helped us to refine and focus our interventions, so that Andrew made huge strides with the same amount of scheduled therapy time he'd always had – maybe even less. And Rob and I felt more capable than we ever had before of steering him in the right direction.

Don't Lose the Faith
Good friends of ours recently had dinner with a pediatrician. The subject turned to autism, and the doctor told them that his personal belief was that early intervention made no difference in a child's outcome, that her ultimate success or failure was hardwired at birth. "There's nothing wrong with most interventions," the doctor said. "They won't hurt. But they don't make any difference. I don't recommend them for my patients with autism."

My friends told us about this conversation because they were so horrified that anyone could go around saying that. They knew how we felt – that the interventions we put in place with amazing people like Dr. Koegel had pulled Andrew out of a dark withdrawn place and helped him to overcome the worst symptoms of his autism.

We know that interventions turned Andrew around, and access to the research we describe in this book provides the scientific proof. From the very beginning, starting with our first speech therapist, we saw this kid who had been receding further and further away from us turn around and start moving back toward us. We saw systematic and scientifically validated interventions work.

Page 6Hard Work
It's shocking how hard it is to keep a child with autism engaged in all the right ways, especially during the crucial early years. Although Dr. Koegel's interventions are engineered to slip into your day-to-day interactions with your child, the truth is that most kids with autism feel a strong pull away from any kind of engagement back into their own private world, and the energy a parent needs to keep pulling back can be overwhelming.

At the very beginning of our journey, Roberta told us time and time again that we had to keep Andrew engaged as much as possible. I remember losing it. Just losing it. I had a fretful newborn who kept me up at night, and after a long day of caring for both small children and driving Andrew from one therapy to another, I was too exhausted to do anything but prop him in front of the TV or let him retreat into his mysterious world of lining things up and laughing to himself.

My husband was writing on a sitcom that had incredibly long hours. By the time he came home at ten or eleven at night, he was totally exhausted, and even on his rare early nights, he was wiped out. We'd both be collapsed on a sofa, barely able to move, and then we'd hear Andrew off by himself, playing his little self-stimulatory games and murmuring senselessly, and I'd be hit by an overwhelming sense of failure. Concern soon turned to anger – I kept thinking it was all Rob's fault, that if he would just go play with Andrew, I wouldn't have to feel so guilty about everything. I had spent the day with the kids – wasn't it his turn?

And Rob was thinking the same thing, of course – that he'd had a long day and didn't have anything left to give, but here he was feeling guilty, and if I would just get up and work with Andrew, then he wouldn't have to feel so bad.

The truth was that we were both tapped out. Neither of us had the energy to engage our son, and we were resenting each other for it.

That was when we realized it was time to start hiring some extra help.

We're lucky. We can afford to spend money out of our own pocket for stuff like that. We hired an undergraduate named Pete Candela – who had worked with Andrew already at UCLA – to come every day for an hour or so late in the afternoon or early in the evening, just to play with Andrew and keep him engaged. These few hours improved our lives immeasurably in every possible way.

Regional centers will sometimes help pay for this kind of support, I know, and a lot of people can call on relatives to help, either financially or with the actual work. My sister Nell used to come in the evenings just to play with Andrew and give us a break. Her energy was unbelievable – at that point, she didn't have children of her own, so she didn't mind wearing herself out with Andrew. She made up great games and kept Andrew happy and engaged every time she came over.

So we discovered there are alternatives to sitting around and glaring at each other.

Page 7Doing the Research Together
Most of the time, Rob and I felt pretty confident about the interventions and therapists we had selected. Occasionally, though, you have doubts. For example, right after Andrew turned three, he had a down period (with Andrew there were occasionally times when he either didn't make progress or even appeared to slide backward for a few weeks), and we both felt a little panicky. We knew of some families who had made great progress with a series of interventions that involved long hours of the children's sitting at tables being drilled by trained therapists. From the beginning, we had felt strongly that we didn't want our very young child involved in any therapy that felt more like work than play. It just didn't feel natural.

But with Andrew plateauing, Rob and I wondered whether we were making a mistake not to try an approach that had so many previously nonverbal kids talking. So we started asking all the experts we knew and respected what their opinion was of that particular approach.

And not one of them thought we should pursue it. They all agreed that a bright, motivated kid like Andrew was going to make progress either way, but on the path we had chosen – where all interventions were playful and fun – he would simply become more and more motivated and social. And while it was true that Andrew's language might increase more quickly with drilling, most felt it would be at a cost, that he would become more robotic in his responses, more like a joyless trained animal and less like a normal kid.

Rob and I talked it all out, and we decided that we wanted to stick with interventions that mimicked the way most kids learn, through play and socializing. Maybe we'd lose a little time, but we were fairly confident the end result would be better.

We did the research, thought and talked about it, and in the end we continued on our way, feeling we had made the best choice for our son, who was soon learning and growing again.

And Here We Are
There was a time when I thought I would never hear my child say "Mommy," never be able to give him a simple direction and have him follow it, never send him alone on a play date to a friend's house, never drop him off at school without wondering if he would spend the day isolated and unreachable.

Now he's excitedly planning his sixth-grade year at a regular private middle school, where he'll be treated like any other student, and where we expect him to bring home good grades and make new friends.

Things change. They get better.