Autism linked to educated parents

Autism “is more a surge in diagnosis than disease,” concludes the Los Angeles Times. Statewide, 1.1% of California elementary students have been identified as autistic, but rate is much higher in affluent communities than in rural districts.

. . .  the number of students receiving autism services, including speech, behaviorial and other therapies, has grown fivefold since 2000, driving up special education costs even as school budgets are being slashed.

“Warrior parents” who fight for services get much more help, adds the Times.

For autistic children 3 to 6 — a critical period for treating the disorder — the state Department of Developmental Services last year spent an average of $11,723 per child on whites, compared with $11,063 on Asians, $7,634 on Latinos and $6,593 on blacks.

. . . The divide is even starker when it comes to the most coveted service — a behavioral aide from a private company to accompany a child throughout each school day, at a cost that often reaches $60,000 a year.

In the state’s largest school district, Los Angeles Unified, white elementary school students on the city’s affluent Westside have such aides at more than 10 times the rate of Latinos on the Eastside.

My niece provides after-school therapy for children on the autism spectrum. She plans to earn a doctorate in psychology and specialize in the field.

The Education Commission of the States reviews state efforts (pdf) to help students with autism, notes On Special Education.

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  1. Stacy in NJ says:

    Something I’m really curious about: There’s a widely held belief that early intervention is quite effective in ameliorating autism. The earlier the identification the better is the belief. There’s probably even data to support the claim. I wonder if this “effectiveness” is more about having identified borderline kids who in generations past would not have received the diagnosis. Do the treatments appear to be more effective simply because they’re identifying more kids who are less severely affected? Would these kids diagnose-out without intervention simply because they were always borderline?

    I imagine this would be a hugely controversial position because anyone faced with the diagnosis of autism for their child is probably going to take all recommended measures. It would probably be impossible to “control” for another outcome.

    But I do wonder how many families are tying themselves up in knots on expensive and exhaustive therapies for children who may not really require that level of intervention. The specialists who diagnose and treat it have a vested interest in identifying as many kids as possible – customers you understand. I wouldn’t blame parents for the better safe than sorry strategy, though.

    • Stacey,

      I think you’d have a very different perspective if you’d been through the process of getting a diagnosis for a child with autism. My experience has been that because autism is a lifelong, incurable diagnosis, many doctors are fearful of diagnosing children without extensive testing.

      My husband and I were concerned about my son’s lack of speech and gestures at 18 months old. His pediatrician waited 6 months to see if the delay would clear up on its own. When it didn’t there were long waits to see multiple specialists. There was a hearing specialist to rule out deafness. Then multiple visits to a team that included a speech therapist, occupational therapist and child psychologist. Hours filling out questionnaires. Hours more of testing over the course of more months. Painful hours of focusing on everything that our child couldn’t do. A tentative diagnosis of speech delay with the caveat that it was probably autism but too early to diagnose. A referral to a neurologist to rule out seizures or other neurological disorders as the cause of the developmental delays. An EEG. An MRI. Multiple blood tests. Crying and crying and more crying — him and us. And finally, 2.5 years later, at the age of 4, a diagnosis of autism. And that’s not even getting into the money and the hours trying to negotiate with insurance companies and emotional toll it takes on a family — and just to get the diagnosis, not to treat anything.

      It was awful. I don’t wish that experience on anyone. A person would have to be seriously mentally ill to go through getting a diagnosis — and through the time, labor and money intensive process of treating a child with autism — if the child didn’t actually need help. It’s not easy. It’s not fun. It’s not fast. It’s not cheap.

      So, it’s not a surprise to me that wealthier, better educated families receive diagnosis and treatment more often. What poor family can afford the time off of work and the money it takes to go through what we did?

      • Stacy in NJ says:

        Amy, FYI, I have a 13 year old son with the diagnosis of Asperger’s Syndrome.

        If you reread my post, my point wasn’t that parents were getting a diagnosis unnecessarily. I questioned the effectiveness of treatments – questioned the claim that early intervention was as effective as some specialists claim – because more borderline kids are currently being diagnosed. Are the treatments effective because they’re effective or are they effective because they’re being offered to more and more less affected children?

        You do kids with autism a disservice when you become defensive when faced with legitimate questions about diagnosis and treatment. The greater our understand of the how and why, not only of how autism occurs, but how and why it’s diagnosed and treated the better able we’ll be able to serve these kids and adults.

  2. Richard Aubrey says:

    In Michigan you’ll see the occasional billboard telling us that, every twenty seconds a child is diagnosed with autism. The smartmouth response is that they should stop.
    Then I read about this issue of possible overdiagnosis and figured that smartmouth wasn’t that far off.
    Autism, like other “syndromes” does not provide a clinical manifestation by, for example, blood study. It’s a combination of behaviors which, at the margin, can be diagnosed either way, even if not visible.
    As you point out, there are vested interests and the easiest thing to predict is that saying a kid isn’t really suffering from autism is mean-spirited and anti-child. Which…nobody would believe and…nobody would want to be accused of, so there is no discernible end to stretching the diagnosis to infinity.
    In the past, there were odd kids who eventually learned to get along, or not. Some of them may have had mild autism and others may have been improperly socialized and some may have had some other affliction. But for the new autism biz, they can all be diagnosed as autistic and the grants roll in.
    And, as usual, the bogus cases swallow money needed for the real thing.
    We’ve all seen it before.

  3. The increase in autism spectrum diagnoses likely has many causes. “Educated parents” may matter for a reason beyond advocacy: In __Late Talking Children__, Thomas Sowell observed that this syndrome correlates with the “three M” characteristics of parents, music, mathematics, and memory.

    With the recent (last three generations) of expansion of college attendance and expansion of women into previously male-dominated professions, male, say, economists (the “math” part of the” three M’s”, now are more likely to marry female economists, and male engineers are more likely to marry female engineers. Where previously, mathematicians married ballerinas, so recessive “autism-spectrum” genes were covered by dominant normal genes, now nerds marry other nerds, and their children get a double dose of nerd (autism) genes. .

  4. Thinly Veiled Anonymity says:

    I think Malcom’s thinking in exactly the right direction. The delay to have kids among the intelligentsia probably doesn’t help the situation.

    I have a really wide range of friends — from PhD types to computer programmers to people who barely graduated from high school, and a very, very large family of “diverse” educational and economic achievements. Out of all the kids in this group, the only ones who have serious developmental issues all have two highly educated, professional parents. All the barely-graduated-from-high-school people I know bred early and have these bright, eager, beautiful kids.

    Inbreeding’s a bitch.

  5. North of 49th says:

    Well, I don’t know — the rate of severe autism among Somali refugees in Stockholm, Minneapolis and Toronto is something like 1 in 25 births — extremely high. Most of these families were not highly educated. I read in Scientific American that a genetic-environmental interaction was being investigated, possibly something to do with Vitamin D processing or absorption or something, since classic autism is apparently uncommon in Somalia or among Somali populations in East Africa.

    My money is on there being multiple factors involved, and different types of autism caused by a different interaction of factors, some genetic but with environmental triggers in many cases..

  6. Given that the total bill for our youngest daughter to see a developmental pediatrician for an autism evaluation was $2,690, is it any wonder that poor families who lack health insurance coverage cannot afford to have their children evaluated? We probably would not have gotten a private eval. without the insurance coverage but just would’ve relied on the regional center and the school district.

    As a taxpayer, I feel strongly that children ought to have to re-qualify for services periodically. My DD needs services now at 3, but hopefully she won’t by the time she is older. It doesn’t make sense to have a lifelong qualification given how much improvement there can be for kids “on the spectrum”.

    • Stacy in NJ says:

      Is it the lack of health insurance or is it the lack of awareness/education/advocacy? Many poor families in NJ have access to CHIP – subsidized insurance for childen- that would cover such services. Medicaid also cover some evaluations. While it could be fiancially challenging for poor families, my guess is it more about cultural issues – an ability to recognize the issues and advocate for themselves.

      • The developmental pediatrician we saw for our DD’s autism diagnosis accepts certain private PPO’s but not HMO’s or Medi-Cal. I don’t see CHIP listed one way or the other.

    • I don’t think that you’ll find a shortage of psychiatric diagnoses among poor children. I expect you’ll find a surfeit.

      For this particular diagnosis, I have sympathy for Malcolm’s thesis. But some of the other comments put me in mind of how the perceptions of the person making the diagnosis. The classic example: Two clean, well-dressed men, one white and one African American, present at the emergency room claiming that they are hearing voices. Historically speaking, odds were that the white guy would get a diagnosis of bipolar disorder, and the African American would get a diagnosis of schizophrenia.

  7. Well, if you go to a pediatrician for what is essentially a psychological evaluation, don’t be surprised when you get what you pay for….

    Schools are required to screen children. All you have to do is take them to the nearest elementary school and voice your concerns. They’ll arrange for a qualified professional to observe your child and determine if there is a need for a full evaluation.

    It’s called “Child Find” and has been part of IDEIA and IDEA for years.

    As for helping ameliorate autism, not possible. But what early intervention can and should do is help the child control the behaviors in order to learn in the least restrictive environment. Ideally, a regular classroom with minimum accommodations.

    • I trust a developmental pediatrician far more than a school psychologist. It takes a lot more training to become the former than the latter, which isn’t even a true field of psychology but rather is part of graduate schools of education.

  8. I also have the same problem with pediatricians who diagnosis ADD and ADHD with a 10 minute office visit.

    I know, not all do; but enough that when I get the info, I just wonder about the veracity.

    • Deirdre Mundy says:

      Especially since then the diagnosis is based on the parent’s perception of the child’s behavior, not the actual behavior. As an ADD girl from an ADD family with an ADD child, I’m always amazed at the way some parents try label a kid ADD just because he (for example) dislikes homework and won’t turn off the Xbox when told.

    • I wouldn’t trust a general pediatrician for an accurate diagnosis. Parents need to consult with either a developmental pediatrician or a neuropsychologist. We went with the developmental pediatrician because it was easier to get the evaluation covered through our health insurance. The evaluation involved 3 appointments, two of which lasted one hour and the third lasting 3 hours.

      By contrast, the school psychologist spent only 45 minutes with my DD total. I’m waiting to get a copy of her report, but I put much less stock in it than the developmental pediatrician’s one.

      • Hi there,

        In Western Australia all school psychologists must be Registered Psychologists and in addition have a teaching qualification.

        They don’t diagnose Pervasive Developmental Disorders but they are often the first specialist to see a child that may show signs of a pervasive developmental disorder. They use screening tools, diagnostic questionnaires etc to determine if referral to a paediatrician, other any other specialist is appropriate.

        The child may then be referred to a paediatrician to rule out chromosonal disorders or other possible diagnoses. At this point the family is also referred to a speech pathologist and a clinical psychologist if the paed. suspects a PDD. These specialists report back to the Paeditarician who makes the final diagnosis or not as the case may be.

        No one individual in this State can make a diagnosis of any of the Pervasive Developmental Disorders including Autism on their own if the diagnosis is to be accepted by Government agencies.

        Just wanted to clarify in case families from my local area are reading.

  9. Richard Aubrey says:

    What do you do on the mild end? Used to have a colleague, a good guy, educated, well-spoken, etc. If the rest of us were cracking up over a joke, he’d be earnestly explaining why the premise of the joke was incorrect. He didn’t get it. He didn’t get metaphor or analogy. He didn’t get that he didn’t get it. He wasn’t the kind of butthead to say, in a meeting where somebody talked about getting the “low hanging fruit”, “haw haw, now we’re talking about apples, haw haw.”. No. He would be honestly confused, sometimes actually getting an explanation later on.
    He is now in accounting where metaphor and analogy and hyperbole are not welcome, so I guess it’s okay for him there. Not having much luck meeting girls, though, although being well-groomed and dressed, and fit.

    • Speech & language therapy can help with this sort of pragmatic language. Also, some psychologists run “social skills” groups to train kids on the spectrum how to better interact with peers.

  10. I’m surprised no one has mentioned the South Korean study that indicates a rate of 1 in 38 people are somewhere on the autism spectrum:

  11. Richard Aubrey says:

    Mike. Problem is that, with other social issues, one end of the spectrum fades into normality so smoothly that there’s no way of telling when it ends.

    For example: My father remarked about the time his first medic was killed. “Mother, I’m bleeding,” the kid whispered, and died. An elderly neighbor who fought in the Phillipines gets to the point of not being able to talk when he speaks of what the Japs did to prisoners and civilians.
    Today, that sort of emotional distress would be considered some of the more severe PTSD. Then, it was one of those things that you picked up in war. Change the diagnosis, mush one end of the spectrum into normality, you can have all the numbers you want.

    • How many people have you met, who are diagnosed with an autism spectrum disorder? How many of those did you feel were misdiagnosed?

      • Stacy in NJ says:

        Only in the past 15 or so year have kids been diagnosed at the current epidemic level. Prior to the change to the diagnostic code only the most affected kids where diagnosed.

        Because of this, Richard, or any of us, have met few adults with the diagnosis.

        • I appreciate your effort, but that was non-responsive.

          I’ll note that before autism was defined, nobody was defined as autistic. So from zero to thousands of cases overnight, merely because of new diagnostic criteria… the horror!

          Seriously – what are your answers to the questions I asked? What evidence do you have that the recognition of autism spectrum disorders and the updating of diagnostic criteria to reflect that understanding has diminished as opposed to increasing the accuracy of diagnoses?

          • Stacy in NJ says:

            Perhaps my response was non responsive because you failed to actually articulate your question in your first throw away comment.

            My point is that our understanding of autism and its diagnosis is still incredibly crude, and, while it is improving, we’re still in the dark-ages when it comes to both treatment and diagnosis. We shouldn’t get a false sense of the accuracy of diagnosis and treatment.

            Also, there is a non-normative aspect to a misplaced diagnosis. Ask any adult who feels they were at one time misdiagnosed with some type of psychiatric disorder if there have been negative consequences to that diagnosis.

            We have10’s of thousands of kids who were diagnosed in the past 10 years on the high end of the function scale and we have no idea what kind of impact that will have societially.

          • Your answer was non-responsive because you didn’t want to answer questions that would reveal you to know nothing about the subject matter. You are giving us your gut feelings, nothing wrong with that, but don’t get into a tiff when others don’t confuse that with science.

        • My younger brother has a friend who was diagnosed with Asperger’s Syndrome in high school in the mid-nineties. I used to babysit the friend when he was a kid, and he was definitely struggling with what we now recognize as AS even if no one at the time could tell his parents what was wrong with him.

          My mom thinks her college roommate probably would’ve been diagnosed with autism if she were a child today. Her roommate didn’t speak at all until she was 5. Then for a long time after that, she would only whisper to a few trusted individuals, who would then tell others what she had said. By the time my mom knew her, she was functioning okay and just seemed rather shy and “quirky” but she went into physics so it didn’t really matter.

  12. Stacy in NJ says:

    You’re right, Aaron. I’m sure you’re much better informed on this topic than I am. And while I only offer opinions, you offer actual science. Thank you for your incredibly rich contribution to this thread.

    • I’m sorry you take offense that some of us like to deal with facts and science, not just gut feelings.

      • Stacy in NJ says:

        And at what point in this thread did you offer facts and science? I guessed you missed my link to Scientific American that discussed the results of several studies related to the autism. Geez.

        • Nice try, but what you actually need to do if you want to vpclaim to be addressing my points with anything but supposition is to reply to them with something other than supposition.

          If you believe your article link is somehow responsive, sto being so defensive and explain how it supports your supposition.

          • Stacy in NJ says:

            But you don’t have any points, Aaron. It’s impossible to respond to an non-existant point.

            And I didn’t offer a supposition. I voiced concerns and questions. You’re confusing my posts with other posters – Probably Richard. Please re-read carefully. You’re making a fool of yourself.