The Challenges of Treating Autism

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Orange County’s leading autism center has an opportunity for a large injection of cash supplied in part by the Children & Families Commission of Orange County.

But there’s a catch: The money comes as a matching grant. Though the amount could be for as much as $7 million, it’s available only if a private donor steps forward with an initial outlay.

The funding would be used to expand the For OC Kids Neurodevelopmental Center in Orange into a regional or even national venue for clinical care, education and research.

In Orange County, which by some estimates has the highest rate of autism statewide, For OC Kids is the rare autism center that accepts public insurance for low-income families, such as Medi-Cal or Healthy Families, said center director Dr. Joseph Donnelly.

Donnelly discussed autism in Orange County with Voice of OC recently, addressing whether autism has been overdiagnosed, the failure of a new law to secure autism coverage for poor families, the link between autism and vaccines and how he hopes to expand his center.

Q: Can you give some background on your center, For OC Kids?

A: For OC Kids Neurodevelopment Center started with a grant from the commission and began seeing children in 2001. In the first 10 years we provided new evaluations and consultations to over 7,000 children. We’ve seen over 21,000 follow-up visits. We’ve provided medical evaluations by pediatric neurologists and developmental-behavioral pediatricians. With some variation according to funding, we’ve had psychologists, speech and language pathologists and family support people. Mainly we do evaluation, diagnosis and try to support families to get the services they need to help children.

Q: Who are your patients?

A: They are children living in Orange County, from birth to age 6: any child with any developmental problem, such as autism, ADHD and other developmental disorders. About 85 percent of children here are diagnosed with something on the autism spectrum.

We also see patients with Down Syndrome, cerebral palsy, language delay, Rett syndrome and others, but most of the kids have autism. And they need an accurate diagnosis and evidence-based treatments. They need help to navigate the service delivery system. …

We don’t just do diagnosis but also provide ongoing care to get services children need and follow them over time. We do a lot of education of families. We let families tell their stories, and we’re able to answer their questions. Sometimes they’ve been going from place to place.

Q: So if you’re low-income in Orange County, this is the only place you can get assistance?

A: If you wanted to see a psychologist, developmental pediatrician or a neurologist with special interest in autism, they take either no insurance or they don’t take government insurance. This is one of the only resources that would do that. … With the generosity of the commission and the support of Children’s Hospital of Orange County and UC Irvine, we’ve been able to see children and accept insurance like Medi-Cal and Healthy Families.

Q: How would you use the grant?

A: We’d like to do much more. So for example, we’d like to see children from birth to age 22. We don’t want to be limited by the funding from the commission [which supports projects for children up to 5 years old].

We’d like to have a multidisciplinary team with speech and language, occupational therapists, special educators, applied behavioral analysis providers [who conduct intensive, one-on-one therapy for autism patients]. We’d like to provide treatment, to go beyond evaluation and diagnosis. Beyond the clinical aspect, we’re hoping to increase training of professionals now and in the future. We’d like to have a whole effort of community engagement to improve services for all over Orange County. … And we’d also like to provide cutting-edge research.

Q: Why does Orange County have such a high incidence of autism?

A: One of the reasons Orange County might have a higher rate — if that’s in fact true — is because of better early identification. Rather than see Orange County as a place where autism prevalence is great, I would hope it’s that pediatricians and parents are more aware. More children are accurately diagnosed here.

Q: Does your diagnosis determine whether schools have to provide a child with additional resources?

The school doesn’t go by the medical diagnosis. It does help to get the diagnosis, because it puts more pressure on schools. We provide the report and tell parents to go to the school and ask for services. Yes, I think it helps. Some schools say, “Great, thank you, we agree.” But some schools say: “He’s doing well educationally. That’s a medical diagnosis. We’re not going to give you any help, because he’s at grade level.”

The degree of severity of autistic symptoms and level of intellectual ability vary. You could have mild, moderate or severe symptoms. You could have an IQ of 120 or 60; you’re going to have different needs.

Q: What are examples of the services schools provide for autistic students?

A: A student might be in a regular class and just get some modifications. The teacher might give extra time or attention or more communication with parents. The school could adapt or modify services for a child, put them in a smaller group.

Or the school might undertake more measures: maybe behavioral intervention or speech and language. Other measures might be occupational therapy or adaptive physical education if the child is clumsy or awkward. …

Q: Is autism in Orange County possibly linked to environmental factors?

A: There is no specific reason suggesting there’s something about Orange County or environmental or genetic factors more at play here than anywhere else.

Q: What’s your view on the controversy over whether autism should be redefined and whether the changes would mean fewer people qualify for a diagnosis?

A: There are conflicting reports based on a few news articles as to whether the new proposed criteria will do much to change the numbers of kids diagnosed. One proposal is to eliminate Asperger’s syndrome and to make a single diagnosis of autism spectrum disorder. …

Part of the issue is people would rather have the diagnosis of Asperger’s than autism, because it is milder, less of an intellectual disability and maybe normal or above-normal cognitive. Asperger’s patients don’t have severe language delay. People view Asperger’s as much milder and more socially acceptable. People think of those patients as being kind of quirky.

Most of the studies don’t show in the end there’s a true difference between Asperger’s and high-functioning autism.

Q: What’s your stance on whether autism is overdiagnosed, and how do you deal with the issue at your center?

A: We don’t want to over- or underdiagnose. We go out of our way to diagnose children with autism when we believe it’s the case. I can remember an expert saying that he’d make the diagnosis to get services. I don’t do that. I couldn’t live with that. I want to help the child get services, but that [falsifying] destroys my credibility. We try to say what we believe and then fight for services.

Q: Has For OC Kids faced claims of overdiagnosis?

A: I’ve heard that: Go to For OC Kids and you’ll get the diagnosis. I’d say, “Come and look at the kids we see. The people come to us because they know they have it.” It’s like an epilepsy clinic: You don’t go there unless you have epilepsy.

[At the same time,] I am worried that autism could be overdiagnosed. If you had a child with an IQ of 60 and they don’t have autism and a neighbor has a child with an IQ of 60 with autism, they’ll get more services. It’s not supposed to be that way, but it has turned out that way. California passed a law to provide behavioral intervention services to children with autism as part of their health insurance as of July 1. …

It’s great that the law got passed, except, I would point out, the law eliminates government payers. You are not entitled to ABA [behavioral therapies] if you have CalOptima and Healthy Families. They exempted government payers from the law. That means children from families who have those insurance programs are not entitled to ABA. …

People with Medi-Cal and CalOptima will have to turn to a regional center and see if they can get services.

Q: As the new law demonstrates, advocates for autism patients have proven to be effective. Do their efforts benefit families with fewer means or opportunities to advocate as powerfully?

A: It’s unquestionable everyone benefits from those with capacity and influence increasing the services. But I don’t think those who are not of means ever access the same level of services. They don’t have either the finances, the wherewithal, the time, the influence to bring all those things to bear.

Q: What is your position on whether vaccinations are linked to autism?

A: I don’t believe there’s any evidence that childhood immunization substantially contributes to the development of autism. I know loads of people who have different opinions. I understand their concerns and worries, but I don’t believe there’s any data to support that notion. I think it is true that children get immunizations and they regress, but that regression may have occurred anyway. The immunization may be a stressor. … It could precipitate a problem that could lead to autism. Those individuals would have developed the problem anyway.

Q: Has there always been as much autism as there seems to be now?

A: The feeling is that we don’t know for sure. It is probably more prevalent than it was before. I believe it is, and yet there is so much of a wider, broader definition of what autism is, increased recognition of autism and some incentives to be diagnosed to receive services. Maybe there was autism previously but we called it mental retardation. Some of the increase is related to that, but most people believe not all, and therefore there probably is a true increased prevalence for reasons that aren’t understood.

— Interview by AMY DePAUL

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