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Does my child need an official autism diagnosis to get help?
This is a scary time for moms and dads. If you think your child has autism, there are things that you can do immediately to improve a child’s quality of life. In this episode, we talk to a mom with two kids with autism and learn about her journey. She will also share some solid dos and don’ts for navigating this challenging time.
Claire
You mentioned being scared. I was really scared when that happened, because remember, it’s my two kids and my only two kids. It was a very scary moment for us. But I used that fear, to drive me to look for answers and to look for resources that I can use to support my kids. Because if I don’t do that, who else is going to help with it? So I basically educated myself. So I can then advocate for my children. Because I am basically their number one advocate. There could be other people that can help me advocate for them. But as a parent, I believe that I’m going to be the first one.
Gene
That’s Claire Lazaro, talking about the moment she learned her child has autism. She’s the director of clinical services at Valley Mountain Regional Center in Northern California. And as it turns out, both of her kids were diagnosed with autism. She has great advice for what to do when you think your child might have autism.
This is An Introduction to Autism. A show for parents who are concerned their child might be showing signs of autism. It is a compassionate, evidence-based series that provides hope and guidance. You’ll learn about the signs your child might have autism, and how early diagnosis and treatments have the best outcomes. I’m your host, Gene Gates. This podcast series is produced by Dr. Jane Howard and Coleen Sparkman from Therapeutic Pathways in Northern California. Claire, welcome to the show. You’re a great guest, because not only are you in the medical profession, but you have two kids that are on the spectrum.
Claire
Yes.
Gene
First of all, I want to say that every child is different. Every case of autism is different. They all respond differently to therapy. But generally speaking, they all go on to live a full, rich, happy, loving, successful life.
Claire
Yes, they can do that. Yes, definitely.
Gene
Let’s start with saying that’s the future that we’re looking at. That’s the horizon that we’re viewing. So our quest is how we get from where we are today. Which is maybe some anxiety, some questions, maybe some fear, maybe some anger, maybe some “Why me?” How do we get from here all the way to that beautiful horizon, which is in fact, waiting for us? But before we get there, what’s the first thing I should do if I think my child might have autism?
Claire
Definitely reach out to your health care professional.
Gene
Pediatrician.
Claire
Yeah, pediatrician, family practice. If you have that, then definitely tell your healthcare provider- if it’s a nurse practitioner, physician assistant. Tell them your concern. Tell them what the things that you’re observing are. And definitely not give up on it. If somebody tells you “No, it looks like it’s okay; it’s probably part of normal development.” Don’t give up on that. Just continue trying to look for answers. Because you have to remember, you are the expert of your child. Your child is with you 24/7. You know if there’s a small thing that is different.
With my son, he wasn’t smiling as much as he was smiling before. When people at church would talk to him he wasn’t reacting as often as he used to. So that was the start. I was like, “What’s happening? Something is wrong.” And then I continued observing it. If it’s just one time, maybe he was in the mood that day. But then it was happening more and more. And so I did consult with a pediatrician. I told them about that. And this is why I tell you don’t stop when they tell you no. Because at that time, our pediatrician said, “No. He’s doing okay. It’s just a normal development.” I kept on observing. And so I see other symptoms. So I was already suspecting it could be autism at this time. Remember, that was 12 months. Every time we had our regular checkup. Every six months I would mention that.
So eventually, when he was about two and a half years, it was just getting worse, because he wasn’t developing his communication as well. The words that he used to speak eventually regressed, as well, before he was able to identify simple things and was able to call me mommy. And then eventually that went away. And he was just saying, “cha cha cha” for everything. And so we decided maybe let’s put him in a daycare. Maybe that’ll help have him more exposed to other kids. So we placed him there and then good thing one of the teachers there noticed that something is wrong. And so she said “Can we refer you to an agency that will evaluate your child?” So I was okay with that. I was very happy. And so she gave me the regional centers number and then that started the assessment and everything.
Gene
Tell me about the assessment.
Claire
They actually did a very thorough assessment. So we undergo intake. Where first they asked you through the phone. They asked all the symptoms- What is happening with your child? What are the things that you’re observing? How is he doing? And then after that they schedule a visit at your home. And there were speech pathologies. There were infant toddler specialists. There was a PTOT that came to the home and did a full assessment to my child to see. And then they saw a lot of red flags. I would always say even through the first phone call, they said “You do have a lot of red flags for autism.”
Gene
Tell me some of those red flags.
Claire
So the red flags are, he just keeps on doing one thing that he likes. There was just one time that he used to do one simple thing at that time. That’s it.
Gene
So one repetition is he plays with one toy every single time?
Claire
Repetitions every single time. And then his language has regressed. His eye contact has regressed. His expression has regressed. And he has very high pain tolerance. He would get hurt. I would just see that he’s got a scratch that’s bleeding. He doesn’t even say anything. He won’t even flinch.
Gene
So those are the types of things that you talked about on the phone. And then they came to the house to do a more physical assessment. Is that correct?
Claire
Yes.
Gene
What are the kinds of things that they do when they do a physical assessment in your home?
Claire
So in the home, it was more of the play. For example, they would give him a cup, a regular drinking cup toy, and see if he would drink it and pretend to play because he was almost three years old… doing pretend play and drinking and he didn’t. He would just maybe bang it or do whatever. Then there was also a dog that they would put out and see if he’s going to be able to play with a dog, like cradle the dog or feed the dog. He didn’t do that as well. He would just hold the dog upside down or in the hair, and it’s not really playing. So those are the things that he did at that time.
Gene
How long was this visitation in your home? Would you guesstimate?
Claire
Maybe about 30 to 45 minutes.
Gene
Do they give you a basic diagnosis at that point? Or they say you’re on a long course, let’s go to the next phase?
Claire
They were very specific in saying that they’re not there to diagnose. They open up with that. They’re not there to diagnose anything. They’re just there to do an assessment and see what they find. And then afterwards, they tell you if there are a lot of red flags for autism.
Gene
Let me make sure I understand this. Your mother’s journey. So a phone call, then an in house visitation. Then you actually go to the clinic.
Claire
Yes.
Gene
Just a regular looking pediatrician kind of doctor clinic? Does it look different? Does it look really similar?
Claire
It’s actually a psychologist and I didn’t know that. And here in California, the psychologist is the one that’s there to diagnose. And then we have the school system there as well. We have a Family Resource specialist. And then the regional center is all there supporting your child.
Gene
And does your child, as they’re going through all this, are they comfortable with this experience? Are they confused about why we have to be here? What’s their experience like at this point?
Claire
At that time, it seems like they don’t really care about what’s happening around them. As long as they’re happy with the toy or whatever they’re playing with. They’re okay, as long as they can do whatever they want to do.
I forgot to mention to you one of the things also that my son likes to do is to spin. He likes to spin around. So that’s one of the red flags as well. And also flapping his hands. And very sensitive with the texture of food. He only eats one type of food since he was two years old. He only eats mac and cheese and milk. And that was it. We supplement it with pediasure. So he would have some vitamins in there and multivitamins. But that’s it.
Gene
So when you go to the clinic, is it similar to the in-home visit?
Claire
Yes. Is it sort of similar to that- the toys that they have, the things that they ask the child to do. It’s almost similar. And then there’s a lot of questions also from the psychologists asking the parent on how the child is at home. And then those observations and interactions on what the child can do. It’s basically that.
Gene
Then from all of this do you finally get a definitive assessment that your child is… I guess, on the spectrum? Is that the proper vernacular?
Claire
Yes, on this spectrum, or has ASD. I actually waited for maybe about 15 or 20 minutes or so. And then I got a summary report. The summary report was maybe about three pages. And I was told that that summary report is what it is- a summary. In a few days, I will get the full report which was maybe like five or six pages.
Gene
That is early in a child’s life. Are they able at that point to have some sort of projection of how extreme the symptoms might be?
Claire
That’s a good question.
Gene
Because we know that this can be something that’s so subtle, most people wouldn’t even notice. And it can be so dire that they actually can’t be on their own. Essentially. Right?
Claire
You are right about that. And that’s the hard part. When I got the diagnosis. It was not just autism. There was a mild mental retardation there also on the diagnosis that I got. So as a parent, I was really devastated. And then at that time, I had my daughter, also, the younger one scheduled for an assessment. And I knew at that time, when I saw that diagnosis from my son that I would also have the same diagnosis for my daughter.
Gene
To be clear. You have a son who’s two and a half to three, somewhere in there. And he has a younger sister who’s about a year younger than he is.
Claire
About one and a half years.
Gene
One and a half, two. And you’re starting to realize “Oh no, I think my second child also has autism.”
Claire
And she has a schedule for that same clinic two weeks apart.
Gene
So as a mom, are you wondering, “What happened? What do I do?”
Claire
That was my question. Your question was my question to that psychologist. Because with that, I was like, “What’s going to happen to my son? What’s his future going to be?” He has autism. He’s got mental retardation. We don’t use that term now. We use intellectual disability. But still, what’s going to happen to him? He’s just about to turn three. And the psychologist was very honest with me, actually. He said, it all depends. It depends on what intervention your son is going to have. It depends on what response your son is going to have to that intervention. And you also have to think that your son is almost three. His brain is still developing. So all those factors play a role. It all depends on what experience he has and what his take on that will be, what his response will be on all those things. And as a mom I didn’t get the answer I needed.
Gene
Of course, we never do. We always want to know the end.
Claire
Yeah he was like, “I cannot tell you that it’s going to be okay. And I cannot also tell you that it’s not going to be okay. What I can tell you is this is what he is right now. And you will just have to wait and see what happens as he grows older.” And he made it sound like if your son has no autism, you still don’t know what’s going to happen to that child as they grow up. It’s kind of like that. You would have to have more intervention in this child, because he has autism.
Gene
Tell me a little bit about your two kids, Claire. How old is your son now?
Claire
He is now 13.
Gene
Okay, and how about your daughter? I’m going to guess 12. We know they’re about a year apart.
Claire
Yes.
Gene
And tell me if this is an inappropriate question. Who is more extreme on the spectrum? Your son or your daughter?
Claire
It’s an appropriate question. My daughter is on the lower end of the spectrum. And it is actually congruent to what the research is showing. The research is showing that although autism is more common in boys, when girls have autism, it’s worse.
Gene
It’s worse in girls? I’ve never heard that before.
Claire
Yes.
Gene
Autism in girls tends to be worse than with boys.
Claire
Yes.
Gene
So your son was diagnosed with autism. And then also he was diagnosed with some intellectual disability. Does this mean that he can learn what I can learn, but it just takes him longer to learn it? Or he doesn’t really have the capacity to fully understand?
Claire
It has changed. His intellectual capacity has changed as he grew. His IQ has actually been consistently 136, 130+ in the genius range. So, it has changed
Gene
That’s like a complete 180. Wow.
Claire
Yes.
Gene
And so as a mom, is there a tipping point somewhere in here where you started to go, “I think he might be smarter than we all think”?
Claire
Yes. When he was having that 35 hour programming. His language/communication skills regressed. So we had to use “PECS” (Picture Exchange Communication System). They took pictures of things that he liked. Number one is food and toys. They put it in small laminated pictures, and it has a Velcro at the back. It’s in a book. Whatever he wants, he has to get it from there. That’s how he started speaking and then eventually he has to speak what that is.
Gene
And eventually he could say macaroni with cheese.
Claire
Yes. And then eventually he has to say, “I want macaroni and cheese” before I will give him whatever he wants. There’s a lot of training and follow through for parents that we had to go through in order to do what he’s learning and follow through in the home. In the middle of that when he was starting to talk, and express himself a little bit and we were trying to get a glimpse of how his mind thinks; we’re like, “He’s smart.” And the way he writes and drew things we’re like, “Looks like this kid is smart.” And he even started at four years old. We heard him using the infant piano. You know how you have an infant piano toy? We heard him playing twinkle twinkle on that piano all by himself. Without the guide. We were like, “How did he know that?” So he has talents that we eventually learned that he has.
Gene
Okay, so let’s try and flash forward not from a clinical person’s point of view, which you happen to be… But let’s take the mom hat point of view. And let’s flash forward 20 years from now. Where do you realistically see your children? I realize they’re different. But realistically, where do you see their lives in 20 years?
Claire
20 years from now I can see that my son has finished college. And he’s most likely working on the computer because he wants to be a computer programmer. He emphasized that to me. He doesn’t want to be a computer engineer. He wants to be a computer programmer. He’s actually created his own website and it’s being hosted. And he’s just doing some finishing final touches before he wants other people to log into it.
Gene
So you’re not worried about him. He’s going to crush it.
Claire
He’s going to crush it. But he might just need a little bit of support, because he still has that literal meaning. So he sometimes would check in with us on how he understands things because he’s very literal.
Gene
He’s also still young, he’s 13.
Claire
Yes, he’s 13.
Gene
So do you think he’ll always have some trouble with some soft skills, some empathy? Or is that a challenge for him? Or are those things developing for him?
Claire
He may still have some trouble with that. Sometimes he doesn’t understand that he has to have that. And then you have to point it out to him. He sometimes doesn’t even know why he did something wrong.
Gene
Let’s pivot to your daughter.
Claire
20 years from now: I can see that she needs support, because right now she’s in regular school, but she still has an aide. She wants to be totally independent. She’s good in soft skills, actually. So they’re the opposite. A little change in your intonation- she picks it up. And she knows that and she tries to calm you down, she asks what the matter is. So she’s good in that.
It’s in studies that she would need more support. I’ve been asking her what she wants to be when she grows up. She’s focused more now on being a YouTuber. She really would need support in finishing college or a vocational school. Because right now, I don’t think she understands the importance of finishing school. She just knows, “Hey, I see these YouTubers, they earn money. Why can’t I just do that?”
Gene
Sometimes that’s hard to argue with, isn’t it, mom? “This YouTuber made $10 million last year. Why do I have to go to college for a $50,000 a year job?”
Claire
Exactly.
Gene
Well, I sure appreciate you talking with us today and sharing your journey. What encouragement or what honesty can you share with moms and dads?
Claire
Yeah. You mentioned being scared. I was really scared when that happened. Because remember, it’s my two kids and my only two kids. It was a very scary moment for us. But I used that fear, to drive me to look for answers and to look for resources at that time that I can use to support my kids. Because if I don’t do that, who else is going to help with them? We are their parents. So we are the first line of support and line of defense for my kids. So in California there’s a lot of resources. I learned that there is a regional center that can support us. So I used the regional center. They gave me information on Disability Rights California. So I used that when I had questions preparing for IEP, going into the educational system. I called them and asked them questions. I used Family Resource Network because we have Family Resource Network here. They have a library of books and videos that you can borrow for free. They have seminars on how to attend IEPs- what to do and those things (what are transition IEPs?) Lots of things to learn. So I use that as well. And then now that I am more in this system I learned that there’s also this Captain website.
If you search Captain Autism, there’s a lot of resources there for parents, for families. Evidence based practices, and evidence based interventions for individuals with autism. And in that Captain website, they also have what they call a fear module. A fear module has videos on: What are those specific interventions that are evidence based? How is that going to be used by my child as part of that applied behavior analysis? If there’s a skill, or there’s something that I want to address I use that. So I basically educated myself. And so I can empower myself. So I can then advocate for my children, because I am basically their number one advocate. There could be other people that can help me advocate for them. But as a parent, I believe that I’m going to be the first one.
There are times that I want to give up. It helps that I have a good husband. And we’re together in this journey. And so when one is weak, the other one strengthens the other. And we tell ourselves all the time, “Hey, if we give up, who’s going to help our kids?” It’s us. We are their parents. So we have to be strong for them. But at the same time, putting in your mind that these kids are going to be growing up, they will eventually want to have their own independence. So the more that they get this early intervention -and the more you give all the support early on with them- that they can learn to be as independent as possible. Then the more that they’ll be successful as they grow up.
Gene
You’re today advocating to parents, as well. Is there any parting message for them? What is your piece of advice to any parent who’s right now starting this journey of “Does my child have autism?”
Claire
Be strong because this is going to be a very challenging way ahead. But there are moments that you will appreciate what is happening. My son and my daughter have taught me how to be a good parent. They have taught me how to be patient. They have taught me how to really love unconditionally.
Gene
You’re getting touched? I can see that.
Claire
Yeah, sorry they really do.
And then there is the poem from Emily Kingsley, Welcome to Holland. That is a good poem to show what the experience of parents with kids with disabilities is. It’s a very good poem, and it’s an enlightening one as well.
Gene
Just dawned on me that there could come a day when your kids could stumble across this video, what would you say to them?
Claire
Number one is that, I love them. And that their mom and dad did everything in their power to help them be whatever they are right now. To get them to be what they are today. Because we wanted them to be as independent as they can be. We wanted them to learn as much as they can learn and develop to their maximum capacity. And the world is their oyster, in their own special way. This autism is more of a superpower for them. They can see it that way. It’s a superpower because they have very good senses: really strong hearing, sense of smell, taste. Those are superpowers that could protect them. And I want them to know that they are unique, and they are special in their own way. And they will always be like that. And we love them very much.
Gene
You’ve done an amazing job. I can just tell. Thank you for sharing your story with us. It’s encouraging. You’re helping so many other families and best of luck to you and we’ll talk again. Thank you, Claire.
Claire
Thank you Gene. It was nice to be here.
Gene
That was Claire Lazaro sharing her very personal journey of discovering and responding to a child’s diagnosis of autism. You’re listening to An Introduction to Autism. In Episode Three, we’ll learn about today’s treatments to get the best outcomes. If you want to stay in touch and get notified when the next episode is released just subscribe to this podcast. Thanks for listening. And until next time, I’m Gene Gates.