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Episode 3

What Are The Best Treatments For Autism?

Jane Howard & Coleen Sparkman

Why does my child have autism? Can vaccines cause autism? Did I do something to cause my child to have autism?

These are all common questions parents and caregivers have about autism. The internet rabbit hole of information on autism and treatment only confuses us. What is the best path to take? We talk to two experts with decades of success in autism treatment and learn definitively about best practices.

Dr. Jane   

If you start a child early in treatment, they have twice the likelihood that their child is going to end up with a normal IQ language skill at the time that they enter kindergarten.

Gene   

That’s Dr. Jane Howard from Therapeutic Pathways in California. It’s hard to find anyone who knows more about autism than she and her business partner Coleen Sparkman. What we know is that the right treatments early on have the best outcomes. This is An Introduction to Autism. A show for parents concerned their child might be showing signs of autism. It’s a compassionate, evidence-based series that provides hope and guidance. This series is hosted by Gene Gates, and it’s produced by Dr. Jane Howard and Coleen Sparkman from Therapeutic Pathways in California. Dr. Howard, let’s start with you. We know the first thing a parent is going to do is they’re going to go down the rabbit hole of the internet to learn as much as they can about autism, and every treatment option.

Dr. Jane   

What happens for many families is they think that a little bit of every treatment that’s available, no matter how crazy or flimsy the evidence might be and we understand that. If I had a child with autism, I’d be wanting to turn over every stone, and that’s really the problem.

Gene   

We’re living during a time of not really believing mainstream medicine, not believing researchers. Have you noticed anything over the last few years to help people and educate them based on good scientific rigor?

Dr. Jane   

It’s been so challenging it actually started with, well, I won’t say it started with but it certainly got out of hand, if you will, with a fraudulent study that was published in I think it was Lancet that supposedly linked autism with vaccinations, the MMR vaccine. And that just gave fuel to the whole Anti-vaxxer movement. And no matter how much research has come back to show it’s not true.

Gene   

One of the things that fuels these things is that there is usually a kernel of truth. With regard to this Anti-vax, what is the kernel of truth that gave rise to this?

Coleen   

I think it probably has to do with the timing. When parents notice it and when it’s diagnosed. And it’s even though there are also some good studies that show signs much earlier. Oftentimes parents aren’t noticing the first symptoms until the child is somewhere around 18 months of age to where they’re not talking, but they just had their MMR at 18 months.

Gene   

And what about the claim for things like mercury in the vaccines and now you can’t use it in America so now we give it to third world countries? Is there truth to mercury being in the vaccines at one point in time?

Dr. Jane   

They have done studies, it’s actually Thimerosal which is preservative of the vaccine. But they’ve looked at that very carefully. They distribute the vaccines now without Thimerosal and there’s been no change in the incidence of autism. So there is never ever any evidence that either the vaccine itself or the mercury-based preservative, Thimerosal, that you’re talking about changed the risk or likelihood that a child would go on to be autistic.

Gene

Well, let me then go further with this rumor that all of that stuff that had this mercury in it got shipped overseas because you can no longer use it in America because we’re woke and aware. Is there any truth to that somehow, did this stuff get pushed off to other countries?

Coleen   

There’s a study out of Scandinavia that Scandinavian countries where they did not ever have Thimerosal in their vaccines, and they still have the same incident. So, it’s both sides.

Gene   

And that’s a good case study, obviously, right. Here’s a country that never had it. There’s been no change in their diagnosis, right? 

Dr. Jane   

Right. 

Gene   

Okay. The other comment was that all of the vaccines were safe on their own, but when you combine them into this one shot, that’s what caused the overload. So other parents, my wife’s one of them said, “I want all the vaccinations. I don’t want them in one shot.” So, we took one and then another visit we took another and then another visit. Can you guys speak to that? You must know what I’m talking about?

Dr. Jane   

Yes, I think most pediatricians accommodate families by spacing out the vaccinations, so putting them on a slightly longer schedule and I think that’s good because one of the things that you want to do is make parents feel that they’re comfortable with the vaccination schedule, and that they will go ahead and have their child vaccinated. As far as I know, there are no data that showed that the incidence of autism is impacted whether or not you have the vaccines administered in a single shot, or series on a given day, or if they’re distributed. But I think it’s important for families to be able to feel comfortable with the administration schedule. And so, I think that’s not an uncommon practice for many pediatricians and primary care folks these days. 

Gene   

So, to be clear, the science doesn’t support this practice, however, you understand where the parents are coming from. So as long as all the kids are getting the vaccines that they need, let’s do whatever we can to accommodate the parents so that everybody is happy, and we get to the same place, we maybe take a longer route.

Dr. Jane   

Yeah, I think everyone is well aware that parents are faced on a daily basis about making decisions about their child’s healthcare and their education. And I think parents really are thoughtful about it, and they try and make the best decision for their child. And I think it’s a perfectly reasonable thing to do.

Gene   

Okay, so I get some preliminary indication that this could be, might be autism, what are the treatments that are available to me? And can you also project outcomes, based on those treatments?

Coleen   

One of the reasons that Jane and I work together is, because as a speech and language pathologist, these families often end up in my office first. So, one of the first things that families often see is different is that they’re not talking, or they’re not talking at the same rate as their peers. So that ends up being something that they want to rule out. But there are other symptoms that lead you to the autism diagnosis at a pretty young age. So, when we talk about what treatments are available, oftentimes, they may get provided with a prescription for speech therapy, as well as Applied Behavior Analysis. And one of the things that we are aware of is, again, when we look at the evidence and the science that that the appropriate amount of ABA treatment that is well designed, that includes all of the skills that are going to help them develop language is really going to be the best bet in the long run.

Gene  

So, I think one of the challenges is that there’s no empirical test. You don’t take a blood test, it comes back positive, and you have a definitive. You mentioned the Applied Behavior Analysis, also known as ABA. Am I right on that? 

Coleen   

Correct. 

Gene   

Yeah. And so, this is something based on it’s like a question and answer, and then an observation kind of a thing. So, this is, to some degree based on judgement of whoever’s making this assessment, is that true?

Dr. Jane   

I think it’s very important that parents be aware of what really goes into having an appropriate, thorough, complete assessment. So, you’re absolutely right, there is no blood test, there is no genetic analysis that you can do that will confirm or disconfirm a diagnosis of autism present. But what you should be asking for is to have your child evaluated by somebody who is really experienced in this particular disorder, especially in young children, because it looks very different. And so, what this means- there should be a really thorough developmental history, there should be interviews with the parents, there should be direct observations. And there are a number of very well-established instruments out there that really assess the degree to which some of the classic areas where individuals with autism have problems, do they show those sorts of issues. And then there are a series of standardized tests. They’re not medical tests, but they are performance tests, they’re observational tests that really can, with a high degree of confidence, lead an experienced evaluator to determine “Does this particular child have autism?” and that’s what parents need to be seeking out.

Gene  

Because we are seeking these binary responses (yes or no) we don’t want a grey or a mushy middle. We want to know definitively, is it yes or is it no? And if it is “yes” then what exactly can I expect from my child? And I guess that’s probably the hard part, you can’t project 20 years down the road and give the parent a definitive answer on a 22-month-old child, I assume. 

Coleen   

Yeah, that’s correct. We’ve often said it would be great if when a child walked in, we could look at them and say, yes, this is a child who’s going to have a high outcome. And this is a child who’s going to have more challenges. But we do not know that when we first are working with a child. What that takes, though, is we do look at what their response to treatment is, how many hours of treatment, are they able to access? How quickly are they developing some of those early skills that are going to help them be able to learn on a faster trajectory? So those are some of the things that we’re taking into consideration.

Gene   

And as you’re looking at how a child is responding; does this look more like a roller coaster? Or does it look more like a hockey stick that just keeps going up?

Coleen  

What we look for is even if the development is possible, that’s what we’re programmed for. But we often talk about a catch-up trajectory, meaning our children when they come in, are maybe three years behind their typically developing peers at the age of three. So, if we can get them on that very steep, accelerated trajectory then we know we’ve gotten a good potential for high outcome.

Gene   

And generally speaking, what percentage of newly diagnosed autistic patients go on to live completely independent, and highly functioning lifestyles?

Dr. Jane   

One of the things to think about is that parents are faced with an array of treatments. And if you go on the internet, and you look, there are literally a couple 100 treatments that parents will get information about the Association for Science in Autism Treatment that has a slogan that says, “Receiving a diagnosis of autism is hard. Choosing the right treatment is even harder.” And this is in part because there’s so much information out there on the internet and other places. When we talk about what does the future look like? I think it’s really important for parents to understand that the research is really pretty clear that if you start a child early in treatment, they receive intensive ABA from a qualified provider for a period of several years, they have twice the likelihood that their child is going to end up with a normal IQ language skill. At the time that they enter kindergarten, then they choose a mixture of methods. 

Which is easy to do, because that’s really what’s out there and what’s being promoted and sometimes promoted by well-meaning professionals will say, autism is such a complex disorder, which it is because it affects social, cognitive, language, self-help skills that you need to have professionals who are, as Coleen was referring to a speech and language pathologist, you need to get speech and language therapy, you need to have adaptive skills, you need to have a little bit of ABA, you need to have a little bit of exposure to a Special Ed preschool environment. That scenario is very compelling to a lot of people because autism is so complex. So, you think you need a little bit of everything. But the research I just spoke to you about is really about making the choice early on to pursue intensive ABA treatment, rather than choosing a mixture of methods. But the data are very clear that your opportunities, your likelihood, is much more favorable to have your child be able to participate in General Ed by kindergarten, if, in fact, you do choose an intensive ABA approach.

Gene   

I want to make sure I heard you right. By the time they enter kindergarten, they can be on a par from an IQ standpoint with all the other kids who are not on the spectrum?

Dr. Jane   

That’s correct.

Gene   

Wow. As they’re going through this K through 12 experience, are there recurrences or are there adjustments that you should or need to make because your child is on the spectrum?

Dr. Jane   

I think Coleen would be well positioned to speak to the social end, but any parent who’s had a child go through elementary school, junior-high, and then a high school knows that even under the best of circumstances, there can be challenges in the social arena. 

Gene  

Coleen, did you have an add?

Coleen   

I think when you talk about reoccurrence, there’s no regression that we see. However, we know that the remaining area that’s the most difficult for individuals on the spectrum is their social skills. And so that social skill development becomes more and more important as they are trying to form peer relationships. So that’s something that we advise families to keep an eye on and the type of ongoing treatment may be something like a social skills group, or something that can support them through developing friendships that are lasting. 

Gene   

So, you’re talking about social skills. And one of the concerns for any parent living in our modern culture is based on this documentary Social Dilemma, which is a hard-hitting documentary showing the damages to children from being online and constantly connected. Do we know yet if social media and being online, whether it’s gaming or otherwise, has an impact on autism or treatment for autism?

Dr. Jane   

I’m not aware of any studies like that. But I would tell you that we certainly have seen cases, and there have been a few presentations at professional meetings and in journals, where individuals on the spectrum have in fact, been victimized, perhaps even more or at a higher risk to be victimized through the social media platforms, than perhaps the risk that exists for children without a diagnosis. So there definitely have been reports. And it’s a concern, I think, for many families, and yet, the challenges that, obviously, their children enjoy being online, they enjoy playing games and interacting with others. But with autism, it may be even more difficult to be able to ascertain “Who’s telling you what? Why are they telling you to do those things? And is this something that you should participate in?” 

Gene   

So, when you say victimized online- could you define that a little further? What does that mean, to be victimized?

Dr. Jane   

I think it actually has gone the full gamut from being in some way taunted, or made to appear foolish or silly within your own sort of social interaction, as well as being preyed upon by others who might want to have you go meet their child or give them money or do things that otherwise parents would say, “No, I don’t want my child doing that.” There have been those kinds of reports where there’s just an inability to be able to foresee this person really isn’t trying to help me, this person is not my friend, and this person is a danger to me. And it’s a dilemma for any parent, but it’s even more so, not just autism, but in the area of special needs. So, if you have any kind of special need in this country, you are significantly at risk for being victimized sexually, financially in any other way, a higher risk. And unfortunately that is just given. And parents know that and they worry about it.

Gene   

You said earlier that early treatment provides the best outcome. What age are you thinking when you say that?

Coleen   

Well, we’ve had clients as young as 17 and 18 months old. So, I think as early as the diagnosis occurs, treatment that is appropriate can begin. And obviously when we talk about dosage, it adjusts based on the child’s age, but it’s often much more than what a family may be thinking that with a 17- and 18-month-old, we may still be looking at recommending 15, maybe up to 20 hours of treatment. And it goes up too as they age get closer to two, three, we’re looking at 35-40 hours a week of treatment.

Gene  

It’s hard to find anybody who knows more about best practices with autism than you too. So, I’m going to ask you to roll back- you’re a 25-year-old mother, you have a child who’s two years old, who is showing signs that they may be on the spectrum. If it was your child, knowing what you know and what you do, what would you do and in what order?

Dr. Jane   

The first thing that you probably need to do is to make sure that you have a full and appropriate diagnosis from a qualified professional. And the reason I’m saying that is, not only do you want to be confident in the diagnosis, but to be able to access some of the really important funding streams that come through both private and public health, they are going to require that there is a bonafide diagnosis. So, assuming that all that’s in place, then really the next step to take is to find a professional, an organization that is providing high quality Applied Behavior Analysis, ABA services, and that they have expertise in working with very young children. Because, as we’ve talked about, there’s really a range to autism. And there are many different applications of ABA, it’s not just to individuals with autism to the treatment of autism. So, you need to find providers who are board certified behavior analysts, that’s a very specialized kind of credential that you need to look for. 

So this is not your garden variety- psychologist, MFT, special education teachers, speech and language pathologists, LCSW- you need to find a Board-Certified Behavior Analyst, and you need to find someone, hopefully an organization, that has a good track record and a lot of experience in working with very young children. So, you should be able to talk with them about the kinds of programs that they use, about their approach, how long they have been doing this, what are the outcomes that they’ve been able to produce. You should be able to ask them about how they interface with a family, how they pick their treatment targets. Without trying to list everything here, there’s a lot to know about finding a qualified provider. And there are not that many organizations like ours that really have this partnership with the field of speech and language pathology, which is certainly what Coleen brings to the table. So, to the extent that the organization is making use of someone who is very knowledgeable about some of the unusual language difficulties you see in individuals with ASD, that would be ideal.

Gene   

Coleen, anything to add to that? 

Coleen   

One thing I’d add is where we started with this, which is the one thing we advise families not to do is Google “autism. However, they’re going to, so we’re going to be looking for something online, the association that Jane mentioned earlier- ASAT (the Association for Science and Autism Treatment) would probably be the place to go to have good vetted information, so that they’re not led down any other path.

Gene   

How long should they expect this process to take to get a fully qualified diagnosis of my child? Is this a visit? Is this a month? Is it a year?

Dr. Jane

Unfortunately, Gene, it really depends on where you live, what your insurance looks like, what your public health services look like. And it varies quite markedly across the United States, which is really a very sad thing for families. And one of the things that you don’t have is time. And so, you really need to do everything to move heaven and earth to try and get this assessment completed as soon as possible. So then you can move on and do the next thing. We have heard stories and other places have families who have been on waiting lists for a year to be assessed or longer. That’s really tragic, because you do not get that time back. So, there is every reason for parents to be very assertive in pursuing this kind of diagnosis for their child, and starting with your primary care person is probably the way to go. But at the same time, you should be looking for well recognized medical centers in the nearest urban area. And there’s probably going to be somebody there that has a clinic and is well equipped to do the kind of evaluation we’ve been talking about.

Gene   

We know that googling “Does my child have autism?” is a horrible wormhole to get sucked down into. So do you have a couple… three credible good resources that you can recommend that people can steer towards, and stay away from that rocky, jetty that we know is waiting to trash our boat?

Coleen   

Well, we mentioned ASAT as the Association for Science in Autism Treatment. A well-known one is Autism Speaks, they have quite a bit of family-friendly information on that one… and Jane?

Dr. Jane   

There are a couple of books that parents can look at that really speak to early intervention. One of them is called Right from the Start. And it’s a little bit dated, but the information in it is still good. I would certainly recommend that. And this won’t actually be necessarily directly helpful for parents in terms of finding the right provider. But I think it’s helpful for parents who might be interested to read: Let Me Hear Your Voice. And this is a book that was written by a mother of two children with autism. And it really talks about the journey that she went on, to find the right treatment for her child. I think her story is very compelling in terms of the difficulties that she had in securing the right treatment. And this happened two decades ago. But it’s not that off in terms of just the challenges of navigating the school system in terms of finding the right provider, and so forth, and so on. And it really also speaks to the loss that happens when you pursue things that are science-like, and not actually scientific in their effectiveness. And there were a number of examples in there where this particular parent, even though she was very well informed and well educated, took some wrong paths because she didn’t really pursue the science. Now, I will tell you without spoiling the end, that it actually had a good outcome for her children. But I think that journey that she went on, some parents would really find that helpful for them.

Gene   

Right. Thank you so much. And of course, we’ll put all these resources in the show notes, but Coleen Sparkman, Jane Howard, thank you so much for sharing your great knowledge on this subject, and the compassion that you have for the parents and the children who are on this journey. So, thank you so much.

Dr. Jane   

Thank you, Gene.

Gene  

You’re listening to An Introduction to Autism. A show for parents concerned their child might be showing signs of autism. It’s a compassionate, evidence-based series that provides hope and guidance. In our next episode we meet Peter Gerhardt. He runs a school for children and young adults with autism. He’s going to share some real-life stories of challenges, barriers and successes of people living with autism.

1. How old is your child or dependent?

2. What are your goals for your child?

3. Has your child been given a formal diagnosis of autism?

4. What types of behavior is your child demonstrating?





Please select a value.

Readiness

Your answers indicate that your child may be best treated in the Readiness program. This individualized, evidence-based program teaches young children skills they need to accelerate their learning and gain independence. Using imitation and naturalistic learning techniques, your child will develop useful skills in the areas of speech and language, cognition, and self-awareness. A program for children ages 0-3. *This is a suggestion based on the answers you submitted. Please contact Therapeutic Pathways at (209) 422-3280 to discuss which program would best suit your child.

Foundations

Your answers indicate that your child may be best treated in the Foundations program. This program gives preschool and school-age children the structure to achieve important social, emotional, and intellectual milestones, helping them test within their peers’ range. With 25+ hours of applied behavior analysis (ABA) therapy per week, your child will develop social skills and better self-awareness for school and home. A program for children ages 4-7. *This is a suggestion based on the answers you submitted. Please contact Therapeutic Pathways at (209) 422-3280 to discuss which program would best suit your child.

Breakthroughs

Your answers indicate that your child may be best treated in the Breakthroughs program. Specifically designed for children who have limited hours due to school schedules, this program removes life barriers by developing communication, social, and self-help skills. We teach your child to engage in appropriate behaviors, helping them interact with peers and develop relationships. A program for children ages 8-11.

Interactions

Your answers indicate that your child may be best treated in the Interactions program. Through guided social skills groups twice a week, this program helps improve social functioning in children ages 5 to 16. Parent or caregiver participation is crucial to this program; our certified staff provides training for successful participation.

Independence

Your answers indicate that your child may be best suited for the Independence program. Geared toward older children, this program includes more in-depth skills that will help your child function independently. Taught skills include functional communication, self-management, and financial literacy. A program for individuals ages 12-25. *This is a suggestion based on the answers you submitted. Please contact Therapeutic Pathways at (209) 422-3280 to discuss which program would best suit your child.

Your Child My Be Suited to Multiple Programs

Independence

Your answers indicate that your child may be best suited for the Independence program. Geared toward older children, this program includes more in-depth skills that will help your child function independently. Taught skills include functional communication, self-management, and financial literacy. A program for individuals ages 12-25. *This is a suggestion based on the answers you submitted. Please contact Therapeutic Pathways at (209) 422-3280 to discuss which program would best suit your child.

Strategies

Your answers indicate that your child may be best suited for the Strategies program. The most age-encompassing of our programs, the goal of Strategies is to reduce challenging behaviors and issues with aggression. These behaviors interfere with independence and community participation, so we work to mitigate those challenges and encourage safe, appropriate behavior for individuals of any age. *This is a suggestion based on the answers you submitted. Please contact Therapeutic Pathways at (209) 422-3280 to discuss which program would best suit your child.

Strategies

Your answers indicate that your child may be best suited for the Strategies program. The most age-encompassing of our programs, the goal of Strategies is to reduce challenging behaviors and issues with aggression. These behaviors interfere with independence and community participation, so we work to mitigate those challenges and encourage safe, appropriate behavior for individuals of any age. *This is a suggestion based on the answers you submitted. Please contact Therapeutic Pathways at (209) 422-3280 to discuss which program would best suit your child.

Breakthroughs and/or Interactions

Your answers indicate that your child may be best suited to the Breakthroughs or Interactions programs. These programs treat similar symptoms, so Therapeutic Pathways will need to meet with you and your child before we can place them within the appropriate program.

Specifically designed for children who have limited hours due to school schedules, Breakthroughs removes life barriers by developing communication, social, and self-help skills. We teach your child to engage in appropriate behaviors, helping them interact with peers and develop relationships.

Through guided social skills groups twice a week, Interactions helps improve social functioning in children. Parent or caregiver participation is crucial to this program; our certified staff provides training for successful participation.

*This is a suggestion based on the answers you submitted. Please contact Therapeutic Pathways at (209) 422-3280 to discuss which program would best suit your child.

Your Child My Be Suited to Multiple Programs

Breakthroughs and/or Interactions

Your answers indicate that your child may be best suited to the Breakthroughs or Interactions programs. These programs treat similar symptoms, so Therapeutic Pathways will need to meet with you and your child before we can place them within the appropriate program.

Specifically designed for children who have limited hours due to school schedules, Breakthroughs removes life barriers by developing communication, social, and self-help skills. We teach your child to engage in appropriate behaviors, helping them interact with peers and develop relationships.

Through guided social skills groups twice a week, Interactions helps improve social functioning in children. Parent or caregiver participation is crucial to this program; our certified staff provides training for successful participation.

*This is a suggestion based on the answers you submitted. Please contact Therapeutic Pathways at (209) 422-3280 to discuss which program would best suit your child.

Strategies

Your answers indicate that your child may be best suited for the Strategies program. The most age-encompassing of our programs, the goal of Strategies is to reduce challenging behaviors and issues with aggression. These behaviors interfere with independence and community participation, so we work to mitigate those challenges and encourage safe, appropriate behavior for individuals of any age. *This is a suggestion based on the answers you submitted. Please contact Therapeutic Pathways at (209) 422-3280 to discuss which program would best suit your child.