Helping parents of children with autism

Raising a child with severe autism

Transcript: Helping parents of children with autism

What I say to parents of children with autism

Wherever they are on this journey, I try to frame the conversation around, what's going right, what do you appreciate, what do you notice that's different, what brings you joy, what lights up your life?  Because this is a love like no other.

And for kids with autism, because they struggle with communication and social skills, they're used to, in every facet of life, getting a lot of negative feedback. Making mistakes and hearing about it. So when they feel a level of acceptance from their parents, that just lightens everything up, for everybody really.

If I see parents who are really discouraged, the approach I'll take is to ask them, "What has your child done lately that surprised you?" And if there's nothing, "What do you enjoy doing with your child?  What's the best thing about your child?  What are you learning from having a child with autism?" 

And usually they'll tell you how they love this child in a way they could never have imagined, or they'll tell you just how deep that love is and how much they're willing to sacrifice. And if I can help them touch that part inside, in their heart, the love for their child, their load lightens.

And in a very individual way I'll look for what they're doing right, because they often feel like, "I'm missing something, I'm doing something wrong, I'm tired of my child repeating himself all the time."  Moms tell me, "I can't even die; this kid's, like velcroed to me."   

And if I can help them celebrate something they're doing right — feel good about themselves, about the effort they're putting in. Like, I'll just observe the love that's in their frustration. They're frustrated because they love; their pain is the evidence of their love. When I can help them see that, I've done my job.

What parents can do when they think their child might have autism

Well, if a parent doesn't know what's going on right now, then getting some professional feedback is usually the most appropriate thing. That could be just asking the child's school to do an evaluation, talking to your pediatrician, you know, things like that. Certainly just getting information or getting another point of view is important. A lot of people are worried, especially with more mild autism.

And because the child seems so normal sometimes, and then other times there's a real disconnect. So it's really important to get another set of eyes and find out, you know, more clearly what's going on.

So to get a definitive diagnosis one needs to find a health professional who's trained and qualified to do it. So a number of categories fit in – developmental pediatricians, child psychiatrists, child psychologists, and others, but those are probably the main diagnosticians.

Other people are trained, and many therapists — physical therapists, speech therapists, occupational therapists — know the signs of autism. While not qualified to give a definitive diagnosis, what we tell those therapists is to let parents know, "Your child has signs of autism," and recommend a definitive diagnostic procedure. Many therapists when my son was young were too reticent to say things like that.

Dealing with challenging behaviors

Well, in terms of challenging behavior, the way that I try to help parents think about this is that we all communicate by behavior. Even speech is behavior, it's an act. So think about, what is your child trying to communicate? 

When a child is having problem behaviors, it's generally because there's an unmet need and the child doesn't have the skills to communicate it in the way we're expecting, in an appropriate way with words, you know.

So if we think about it this way, that the child doesn't have the skills he needs or she needs, what's the behavior trying to communicate?  We can listen more kindly and we can have the outlook of teaching the behavior to get whatever the child needs that the child doesn't have. But it's because the child doesn't have the skills.

When we see it that way — this isn't a child being bad, this is a child with autism who has a communication deficit.

Working with a child who has a narrow range of interests

When a child has a very narrow range of interests, this can be frustrating for parents. The way to start is to just be with your child and do what they're doing. When we join our child's world, that's how we connect. And then that provides a motivation or a reason for the child to join our world.

So I can give you some examples from my years as a therapist. So I remember a little boy, about seven, and he was just stacking LEGOs, and I sat on the floor with him and we stacked them, and I got his parents to also sit on the floor and stack the LEGOs. And basically I helped them to just be with their son.

He started building elaborate structures with LEGOs. He would build shopping malls and build diners and restaurants that he visited. And it became very creative, and his parents were doing it with him. Another little boy that I worked with, and I can remember it so clearly, like sitting on the floor with him with Matchbox cars and trucks. And he was picking up pieces of lint and little pieces of paper and putting them in the trash truck.

Later as a teenager he volunteered in his neighborhood to clean up the neighborhood when they had a, you know, neighborhood crews of people cleaning up. And now he has a job where he cleans up things. [laughing]  So it's become a useful skill, and he became valued in his family and valued in the community. And he's actually got a job he can do.

So it's often joining with a child that we can try to make what the repetitive activity is useful. And sometimes there are more complicated repetitive activities or narrow interests. Kids that are interested in computers might become computer engineers, or they might test software. But it started out with narrow repetitive activities.

Using the narrow activities to build a relationship is really key. And that helps the child enter the world of the family and the broader world. But if a parent and teachers are expecting the child to be a certain way and not joining with the child, then you have a lot of frustration building.

How parents can collaborate with teachers and other professionals

Working effectively with teachers and therapists can often be challenging. I think just appreciating one's teachers and therapists goes a long way. I can remember myself, sitting down with my son's speech therapist, and she's playing with him, and she's joining with him. And I'm like, "You're not teaching him to talk. I don't get it." 

But she was very patient with me, and eventually that was very helpful. But I was very frustrated, and I wanted her to get him to talk. And it took me a while to appreciate that she was doing everything that she could do.

So what's important is understanding for parents, that autism is lifelong, that it changes, that wherever a child is when they're diagnosed, there's good chances they'll develop along the way and become less symptomatic. And that everybody's doing the best they can — teachers, therapists, school principal, probably — everybody's doing their best.

Sometimes we get angry, sometimes we need to advocate for better services, but really, appreciating what people are doing and realizing this is a steep mountain to climb, this is like Mt. Everest. Autism is difficult. It's challenging, whether it's severe or mild.

Sometimes I think the mild autism is more challenging, because then we think, "Oh, if we just do this, or we just do that," or, "We should push a little harder, we should do more therapy" — I think that's harder to accept.

Sometimes parents will feel bad for me, like, "Your son doesn't talk."  And actually I think the severity of his autism led to me accepting who he was and is, whereas if he was more advanced I think I would have pushed much longer. So I think that's really challenging.

The bright kid with autism who can talk fluently but has narrow interests, who does not communicate well doesn't pick up social cues, we want to think we can fix that. Now, we can help that child, but that child will always be different.

And that's actually part of what's beautiful, is that we get a sense of the human condition, that there's a really broad variation of what it means to be human.

How the field of autism is evolving        

Compared to 30 years ago, I think the tools and the methods for helping children with autism have evolved, and they're more effective, and there's more science behind it. And there's more experience in the professional community. So 30 years ago very few schools had classrooms for kids with autism and virtually no kids with autism were included in the mainstream.

That's a very different scenario now. So many kids with autism are included with their same-age peers, and children with autism that have more significant challenges have classrooms dedicated to their needs. And so I think the field's advanced in that sense.

I think we know what to do, we know things that have a good chance of working, and when a child can get early diagnosis and the family has access to the services, then we see the most progress.

But the access is not equal. So children of color and — are diagnosed on the average later and have less ability to get the services they need. So this is still a problem.

When children don’t connect emotionally

Parents are often exhausted because they don't feel positive reinforcement. Now, why is that?  This is an important part of autism to understand, because when your child likes things more than you, there's a feeling of rejection.

The child who wants to line up cars, or play video games, or bounce a ball endlessly, whatever it is, and is not interested, doesn't read your face, doesn't look at you that much — that translates at the emotional level into frustration and rejection.

So again, I help them to look at what they're doing right, what their kid's doing right, and if I can help them see that everybody's doing their best, there's peace in that.

And that's really one of the key messages. What do you enjoy about your child?  What are you working really hard at?  And, gee whiz, when I look at you as a family, I have to believe everybody's doing their best.

How parents can help with a child’s language development

So language development is really key, and it's one of the best predictors for progress along the autism spectrum, and it's also a good predictor of lessening behavior problems. What can parents do, besides just joining with their child, is speaking with their child but in short sentences.

And getting involved with the speech therapy their child is getting — whether it's Picture Exchange or apps on an iPad, there's a lot of things parents can do, hands-on things that are available now.

 And what I generally recommend to parents is, get whatever services you can publicly, through your school or your early intervention program, through your insurance policy, and then supplement that privately to whatever extent you can.

So if you're getting one session a week of speech therapy and you can get another session somehow, do that. Go to that therapy session, watch what the therapist is doing, get the therapist's prescription for what to do.

And there's a book called Apps for Autism that I like, written by a speech therapist that reviews various apps, and there's a lot of reviews online. There's also something called the Hanen Program that comes out of Canada, which is specifically a program for parents to help children with language development.

So those are the kind of practical recommendations I give parents of young children with limited speech, because to whatever extent you can improve communication, everything else is going to generally improve.

Seeing autism differently

When my son was diagnosed I didn't know anybody who had a kid with autism. Now on the block live there's kids with autism, everybody knows somebody with autism, and that community is helpful.

I went with my family to the very first Autism Awareness Day at the Philadelphia Zoo. This was in, I want to say about '85, and it was a small picnic grove, there might have been 30 or 40 people there. Recent years, the whole zoo fills up with families of children with autism. So having a community is a big difference.

Neurodiversity, that concept that autism is part of the diversity of the human condition and it while it has special needs, it has special abilities. Kids and adults with autism also have special abilities, and that's to the benefit of society.

So my view is very different. Not that any of this is easy, not that anyone volunteers for it. If there was a cure, I'd be in line for it. That there isn't, I love my son the way he is. He's opened the world to me, he's taught me a lot about human nature and the human condition, and in that sense he's been a better son than I could have imagined.

Appreciating the strengths of people with autism

There's many good characteristics of people on the spectrum that are overlooked, maybe, in the beginning. So these characteristics are broadly dispersed in the human condition. So for example, if I ask a room full of people, "Is anybody here ever socially awkward?" most people will laugh or raise their hand.

People with autism, when they get a job, when they have the skill set to get a job, they don't tend to waste time socializing. They come to work on time, they do their work, and their repetitious nature is actually an advantage. And their single-minded focus is an advantage. So we can look at each individual and find the traits that they have.

And this is true of neurotypical individuals as well as neurodiverse individuals. We can look at their traits and find the things that are advantages, and find the ways that they can make contributions to their family and community and society. So it really opens up a different way of thinking about who we are.

Listening to your children with autism

The really important thing is that each individual has an element of uniqueness. There's an element of sameness and an element of uniqueness, whether that person is neurodiverse or on the autism spectrum. So it's really honoring the uniqueness of every individual that's key.

Because just knowing one kid with autism or one adult with autism or knowing 100, that doesn't mean you know the one you're talking to. And I run into that in my own work. The mistakes I make usually come from not listening closely enough, and thinking I have the answer or I know what this is about. When my mind is open and receptive and I can understand the individual, that's when I do the best for them.

So sometimes I think I understand something, and a recent example was in therapy between a father and son. The son is 20, he's dropped out of college, he couldn't handle it, but he's very bright. He's playing computer games all the time. And I think he doesn't have real friends.

His parents think he doesn't have real friends, and I agree. He doesn't seem to have real friends. So I talked to him about it, and he tells me, "They're real."  And I asked him to explain it to me, and he says, "You know, we play a game where we talk to each other, and it's all text-based. I don't know their real names. They have avatars. They don't know my real name. They don't know what I look like.

"And that makes it easy for us to communicate, because I have trouble processing language. Text-based — I can think about it, and I can answer."  And I said, "Yes, but what do you talk about?"  He said, "Well, of course we talk about the game, but we talk about everything. We talk about our disappointments, we talk about what makes us happy, what makes us sad.

"One guy had a date and she didn't want to go out with him again."  And then I said, "Do you ever want to meet your friends that you don't know their names and don't know their faces?"  And he said, "Oh yeah. And I think we're going to plan to go to a tournament for this game we're playing." 

So he totally exploded my idea that online friends weren't real friends. Even if he wasn't going to meet them in person, they were real relationships, and I had somewhat of a stereotype of that. Like, I did think it was a social interaction, but I was more like his parents thinking, "This isn't real."  But what I found out was, it is real. And I helped his parents understand that it is real.

And now I'm helping other parents understand that these online interactions are real whether they lead to something else or not. Of course we hope they do. And this young man is actually meeting two of his online friends in a couple weeks and they're going to be in a gaming tournament together and they're sharing a hotel room and et cetera. But even if they weren't, he's been communicating with them, and it is moving to another level.

So just really listening to him opened up for me how online friends are real friends.

Transcript: Raising a child with severe autism

Learning that my child has autism

The birth of my son was, you know, just an amazing moment. And you know, the first year and a half of his life seemed normal. And then around 18 months he stopped speaking, he started pacing, spinning, you know, all the red flags of autism.

So of course I thought it would just be a blip on a screen and would go away. But I've been living and learning about autism ever since. It's been a hard journey at times.

When it was time to start nursery school no school would have him, and then that led to testing and then early intervention. And then getting a diagnosis for the first time I thought my head was going to explode, and then a second opinion, a third opinion, it was hard to believe.

When I look back at my own experience, I thought I had the perfect baby, I thought this was the son I'd been dreaming of, and then it turned out he was such a different son.

Trying to help my son with severe autism

You know, I was a teacher — actually, I was a reading teacher, and I had taught young adults and teens who were illiterate how to read. So I thought, "Oh, he'll catch up, I can teach him."  But that just wasn't to be. He was then and is still on the severe end of the autism spectrum, and over time that reality just kind of settled in.

So by the time he was eight, going on nine, I no longer had an expectation that things would change substantially. And they haven't.

Well, at first, when it's hard to believe, that's denial, and then you're angry, usually. For some people though, if they've been worried and wondering and trying to get a name for this, some people have a sense of relief that they now have a name for it, that they now can make a plan what to do about it. And certainly I see that a lot.

But also I see, you know, people that have a hard time believing it. Especially the more mild autism, it's easier to just think, "Well, he'll catch up, she'll catch up. We'll just do everything. We'll just do everything."  And certainly, you know, I did.

One reason that I don't have guilt is that I tried everything that made sense to try. So the alternative things people read about today — I did them all, the 19 — the late 80s version. Of everything people talk about. He got ABA, he got Picture Exchange, he got Occupational Therapy, he got Floor Time. He got versions of everything that's out here today, and I don't regret any of it, because I can look in the mirror and know I did my best, he did his best.

Accepting and appreciating my son with autism

Change was very slow and really in small pieces. I think what changed the most was actually me. I tried so hard to change him, and it was me that changing the most. It was me learning to kind of accept life the way it is.

What changed in him as I accepted him was there was no longer this struggle to make him different. I think he was happier and our relationship was better, because I wasn't pushing him, I wasn't expecting him to be different, I was happy with little things. I was happy if he hung up his coat or put his trash in the wastebasket or whatever.

I learned to appreciate the little things, the things he could do, and to celebrate them.

Well, the way I communicated my acceptance was to do what he wanted to do. So if he wanted to take a walk instead of me trying to have a catch with him with a basketball — so instead of trying to do the things he didn't want to do, I would do with him the things he wanted to do. He wants to go to the playground, he wants to be on the seesaw, he wants to swing.

Whatever he wanted to do I would join in, and of course I would try to get him to do the things he had to do — eat his meals, you know, use the toilet, go to bed, things like that. But as much as possible I'd follow his lead and do what we could do together, think about what could we enjoy together.

How my non-verbal son with autism communicates

Well, he understands quite a few things, but really mostly really basic things that he wants or needs, or he lets people know. Even in the summer, he'll get a jacket to indicate that he wants to go out, or he'll get the keys to the car to indicate that. So a lot of his communication is by gesture, and he's developed a system where, you know, I can usually know what he wants.

And also because he's generally happy, it helps other people to take care of him, because he's not difficult like that.