What Happens When Your Child Has Autism in Davis? Davis Schools Not As Accommodating As We Would Think

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Author Talks About His Experience Getting Services for His Autistic Daughter at DJUSD

Aaron Wright just came out with a new book, Daisy Has Autism, a memoir of his experience with his daughter and the battles that they had in Davis schools attempting to get her diagnosis recognized as a disability and to quality for special education.  Eventually they had to leave the school district and she is attending a non-public school.

Aaron Wright met with the Vanguard to talk about the book and his experiences in the Davis schools.  Mr. Wright grew up in the farming town of Madera in the Central Valley, and came to Davis in 1993 as an undergraduate.  He finished school in 1998, then moved to the Bay Area with the woman that he would marry.

He went to graduate school, became a nurse and ultimately became a nurse practitioner.  He moved back to Davis in 2004, when he was hired at the UC Davis Medical School in Sacramento.  About a year and a half ago they moved out of Davis.

“I would consider Davis home for at least half of my life,” he said.

Vanguard: What inspired you to write this book?

Aaron Wright: I think it’s a story that needs to be told.  Definitely it’s a very personal story.  It is essentially a memoir, stylized as creative non-fiction.  It’s a passion project for me, my daughter, the younger of two children, is autistic.

For me it’s a book about access, discrimination, and about what we value as a community and where we put our efforts and attention in terms of public education.

Vanguard: What’s your experience been like as a father of an autistic child?

Aaron Wright: Personally it’s great – I love my kids, I love both of my kids.  I don’t necessarily think in terms of treating them different, clearly they’re different individuals.  One happens to be disabled, so things for her have been, clearly have been challenging.  I’ve never really personally struggled – we’ve had moments… it’s a lot bigger of a time investment when dealing with a child whose got a disability.  But I wouldn’t change her for anything.

The frustration for me – definitely the hardest part of her disability definitely is not her.  It’s the systems and structures around her that have perpetually failed.  That is what I want to get out in the world and expose – what I see is a definite wrong.

Vanguard: What are her struggles?

Aaron Wright:  Typical for autism, it’s a disorder of social communication.  She’s always struggled socially, she’s always struggled to communicate.  That’s evolved as she’s received therapy (she’s now 13).  Currently she is in a school that is designed for kids like her.  It’s not a public school.

She is communicative – so she’s not without the ability to communicate.

One of the things that maybe I’ve struggled with as a parent is – if you’ve met one person with autism, you’ve met one person with autism.  No one rule is universally applicable.

She certainly struggles in her own unique ways – the flavor of autism that she has.  Typically there is a fundamental difference between the development of boys and girls.  They manifest in even normal neurotypical development – you take a ten-year-old girl and a ten-year-old boy, they act differently.  When they have developmental disabilities they typically act differently.

She doesn’t necessarily have some of the more typical outward autistic features you would see in something like “Rain Man” or something like that.  But those core issues and deficits certainly are there.  Making friends has always been a challenge.  Not adhering to a routine – you have to adhere to a routine or regimen.  That’s been fundamental to who she is.

She also struggles in terms of learning… her ability to read and write has always been compromised.  She’s always done well in concrete tasks – so something like math has always been at more of a neurotypical level.  But a lot of social nuance has sort of escaped her.

Establishing friendships has always been difficult.  Not only because she has a hard time doing it, but because of the environment that she has been in and the teaching environment that has never really helped those neurotypical kids engage children who are disabled.

That innate ability that kids have for social communication reciprocity between peers really breaks down in a child that’s autistic.  If it’s not supported it can lead to pretty negative consequences emotionally for that child if not physically.

Vanguard: What was your experience like early in her schooling?

Aaron Wright: Challenging.  Very challenging.  Even before we got her to the point where we were entering public education, it was challenging to get the system to recognize that she was disabled.

I draw a lot of parallels between the gifted program here, the AIM program and special education.  If she were gifted – and I believe she is – all the tests that she’s taken says that she is – she’d have a much easier time accessing her education and would have been put onto a different track than where she was.

It was incredible to me the amount of resistance that we were met with in terms of one, getting her identified as being a child with a disability, but two, once finally obtaining that identification, getting appropriate services.  A lot of it was regressing to, I’m going to step back from the accommodation issue and the access issue, I just need to make sure that she’s safe at school.

A lot of the more typical educational items took a back seat to making sure that she wasn’t being harmed emotionally and physically at school.

Vanguard: What would the school say when you tried to get them to recognize her as having a disability?

Aaron Wright:  One they say that they are under no obligation to follow the recommendations of any sort of outside agency or testing group.  They would openly deny that she was disabled when we had her tested by the district.  They fabricated the results of the testing they did to say that she wasn’t disabled.

It took an incredible effort on their part.

To get back to why I wrote this – I kind of want people to not feel like they’re alone.  In this community, people are so wrapped – at least special needs parents – in trying to maintain your own household and fill the needs of your kids, that in some ways it makes you lose track of the community connections that most normal people would have.

You begin to feel isolated.

The tactics used by schools – it’s a little bit like gaslighting.  ‘There’s no problem here.  We see nothing wrong with this.’  You’re overreacting, it’s overblown.  Because you don’t necessarily belong to a community that’s as vocal as say an AIM community… or any other community of specialty parents.  It’s easy to railroad or roll over those parents.

Vanguard: What was their suggested course of action?

Aaron Wright:  The suggested course of action was that she was not disabled.  She should go through school as unsupported.

Vanguard: What were you experiencing in terms of her reaction to the school?

Aaron Wright: Struggled academically.  Struggled emotionally.  Struggled socially.  As things evolved, she was a frequent target of bullying.  Ultimately (she) would turn on herself.  It was horribly psychologically traumatic.

Vanguard: At what point was she diagnosed privately?

Aaron Wright: She carries a myriad of diagnoses.  The school district never identified her until she was early elementary.  First, second grade.  That was only because outside agencies had.  They’re pretty resistant to that.  We knew she had developmental disabilities before first birthday.  Before her first birthday we had county services in our home, providing what they called at the time infant specialists providing occupational therapy and eventually it morphed into what’s called speech therapy.

From the time she was 11 months on, she had qualified for services under Altra Regional.

Vanguard: Who were you having these discussions with at the school district?

Aaron Wright: The typical process here…  Clearly we knew she was disabled.  But in order to qualify for special education, you have to be tested, it’s not just a sign-up.  That process here – at least at the time we were going through it, resides at the Da Vinci campus or the Valley Oak Campus.  By the time the child reaches three years of age, if you’re qualifying for county services, that then becomes the school district’s responsibility (at age three).

There has to be a transition of service.  Your options as a parent, you have to facilitate that and go to what was Valley Oak.  Essentially you’re going to the special ed department, you’re saying I need my kid to transition to special education services so they can pick up in the preschool that they have there.

This is where they stonewall many parents.  After facing unfriendly circumstances, we decided to stick with children’s therapy center on our own and pursue a private preschool.

The next option is when you enroll in school.  In our circumstance, we knew we were going to need services.  So before we enrolled in kindergarten we again engaged the district – we’d like to start this evaluation process to see if she qualifies for special ed.

Once you approach the school district to say, you want your kid tested for special ed, they’re under the obligation to do that.

Vanguard: Ultimately what led you to pull her out of public school?

Aaron Wright: There’s parts of that I can’t talk about.  If you read through (the book) you’ll probably get a decent sense of where our story headed.  But I did have to truncate at a certain point because there are certain things I just can’t talk about.

I will tell you that I don’t think that there is an effective special education program in this town.  Now if I was going to defend them at all, I don’t think there’s an effective special education anywhere in public education.  California I don’t think is good at it.  Davis seems particularly adept at escaping their responsibilities.

Vanguard: That’s kind of what led to what happened with Max Benson?

Aaron Wright: Absolutely.

Max is absolutely a tragedy and it struck really close to home for us for a lot of reasons.  But if you can step back from the tragedy of what had happened, you’ve got to ask yourself why was he there?  And what were those people there doing.

Arguably people, who are not provided with appropriate training when confronting a problem, come up with creative solutions.  It doesn’t mean that they’re good solutions.

You take a child who has predictable autistic behaviors and restrain them in a prone position for nearly two hours.  It is predictable that there is going to be an adverse health outcome.  That is Max’s story.  That’s the singular issue that they’re working on outside of what I’m talking about.

My question is what is the mechanism that put Max in that school?  Why was Max not able to be educated alongside his non-disabled peers here in Davis?  Why was his mother forced to put him on some kind of public transit, ship him 90 minutes away from home?

There is a fundamental problem with not allowing those kids in town.  There is an implicit if not explicit (implication that) those kids do not belong in our classrooms.

Vanguard: So you think there’s a bias?

Aaron Wright: Oh absolutely there’s a bias.  They’ve almost kind of weaponized, weaponized is the wrong term, but they’ve turned the Kubler-Ross’s stages of grief on their face.  They deny, deny, deny.  Then they get angry and when there’s finally acceptance that they do not have the services – which they don’t they don’t have the resources or services to provide a free and appropriate education to these kids, they’re finally put in a circumstance where they have to send them out.

Why in a town where there’s GATE/AIM program, an entire campus dedicated to Spanish Immersion, at least half of a campus dedicated to Montessori education, why is there not a program for autistic kids in this town?

You’re doing a disservice not only to those families, you’re putting an additional hardship on that family because their child cannot be educated in their town that they live in.  That makes it difficult if they want to play youth sports.  You’re taking away any sort of social access that that child may have in a child that’s already socially challenged.  And you’re doing a disservice to the neurotypical kid in this town to learn what it’s like to be educated alongside a disabled peer.

It’s lose-lose when you don’t identify them and two when you send them out of your school system and out of the community to be educated.  And it de-humanizes kids.

I can’t imagine what the people who were restraining Max were thinking.  But I can’t imagine that in the back of their minds somewhere they did not see Max as lesser because the community where he came from devalued him.  If they truly valued Max as much as they valued someone else, they would have had Max in public school here and would have provided him with appropriate supports here.

Vanguard: So is that similar to the experience that you had here?

Aaron Wright: I think that similar to a lot of experiences people have had here.  The sad thing about my story is that it’s not an uncommon story.  One of the sadder parts is that people don’t feel as if they can speak and say anything about it.

Vanguard: How many people are we talking about?

Aaron Wright: I can give you some hard stats.  There’s 8500 kids enrolled in public education in Davis.  The identification rate for special ed in California and I think in Davis hovers somewhere between 11 and 12 percent…  You’re talking about somewhere between 900 to 1000 students.  That’s that are identified.

The CDC estimates one in six kids has a disability that would be a qualifying disability for special education.  That puts that percentage somewhere closer to 16.5 to 17 percent.  If Davis is identifying 12 percent of its students, it’s still missing 5 percent.

One in six kids is not an insignificant amount of children that are not being supported by public schools.

Vanguard: What do you think is behind the reluctance?

Aaronson Wright: Especially in a community like Davis, there is such a high focus on our schools’ academic excellence.  It doesn’t behoove anyone to have a poor education system here in town.

One of the draws to people moving here is that I could feel comfortable putting my children into public education in that they’re probably going to get a high quality education – because kids get high test schools, high SAT scores, how many kids go to four year college, and that sort of thing.

I think there’s an inherent bias against kids that will draw down that average.

Second there’s a financial issue.  SELPA said they’re going to increase their educational funding to the district – that doesn’t mean that special education funding in Davis is going to get more money.  There’s more money coming from the county, but the district is going to offset that.

There is a significant financial impact that special education has on budgets.  That’s undeniable.  Costs will be higher but they do not want to pay for it.

There’s a real human cost associated with not identifying (special education students) and if you do finally identify after the Herculean effort it takes parents to get these kids identified – what does that ultimately do to that family and what does that ultimately do to that child?

In the case of Max, he paid the ultimate price for their lack of ability to provide appropriate services here.

The school district knew where they were sending him.  They were under the obligation to vet that facility.  And they had every right to review the records and knew what was going on in that school.  Yet they still chose to send him there.

One of the real tragedies is that they still haven’t really fully acknowledged that he’s a Davis Joint Unified Student.  Just because he was at some other school – he was placed there by our district.

—David M. Greenwald reporting

The book is “Daisy Has Autism” by Aaron Wright – it’s available in softcover and Kindle on Amazon.


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About The Author

David Greenwald is the founder, editor, and executive director of the Davis Vanguard. He founded the Vanguard in 2006. David Greenwald moved to Davis in 1996 to attend Graduate School at UC Davis in Political Science. He lives in South Davis with his wife Cecilia Escamilla Greenwald and three children.

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7 thoughts on “What Happens When Your Child Has Autism in Davis? Davis Schools Not As Accommodating As We Would Think”

  1. Matt Williams

    The following interchange jumped out at me when I read this article.

    Vanguard: At what point was she diagnosed privately?

    Aaron Wright: She carries a myriad of diagnoses.  The school district never identified her until she was early elementary.  First, second grade.  That was only because outside agencies had.  They’re pretty resistant to that.

    What struck me when I read that interchange is that the key question that is being asked by Aaron is whether the school district acted appropriately when they “never identified” Daisy as autistic.  That question focuses on what the role of a school district is . . .

    — Are schools part of the health care system?
    — Do the employees of the school district have sufficient medical training to be making medical diagnoses?
    — Shouldn’t any diagnosis about Daisy’s medical status come from the health system?
    — What are the protocols for officially conveying the results of a medical assessment to the parents?
    — What are the protocols for officially conveying the results of a medical assessment to the schools?

    Our society has evolved a lot since I went to First Grade in 1953, and I personally believe some of that evolution has resulted in parents expecting schools to take on roles and responsibilities that were a child’s parents’ roles and responsibilities when I grew up.  One of those was that it was that parents were responsible for seeing to diagnostic and therapeutic medical care for their children, and schools only provided triage-level emergency care in the case of “collisions” (a nod to Darrel Dickey and Bill Marshall in that choice of word).  I’m not sure there is any reason to change that.

    JMO

    1. Bill Marshall

      Not disagreeing with your thrust, Matt,but there is another factor in play, perhaps…

      The tendency to “label” for various reasons… when I was growing up (about a six year lag), the “label du jour” was ‘hyperactive’… then ‘ADD’… then other terms… back in the day, they drugged the kids… some of those ‘diagnosed’ were actually dealing with parental abuse, and acting out…

      A lot of the ‘diagnoses’ may be/are a result of “inherent bias” to label… there are truly biochemical/brain chemical issues with some kids… others may exhibit similar symptoms, but may be a matter of ‘brain damage’… others may exhibit similar symptoms caused by environmental/psychological issues…

      Doctors (as far as I know) have no firm diagnostic tests to sort those things out… so, no, the schools are even in a LESS professional place to diagnose, much less come up with appropriate medical, other psychological treatment, or know what the best behavioral/situational measures are best for the child.

  2. Eric Gelber

    You are correct that society has evolved a lot since you (and I) went to first grade in the early 50s. Thank goodness. Before the late 60s to early 70s, children with disabilities were excluded from the public school system entirely and relegated to segregated settings, assuming they received schooling at all.

     

    Federal and state law now guarantees all children, including those with severe disabilities, the services and accommodations they need to receive a free appropriate public education in the most integrated setting appropriate. Education agencies are responsible for assessing students who may be eligible for special education and related services using qualified professionals (who may or may not be district employees, and who may include medical professionals) to determine eligibility and then to develop an individualized plan to meet the educational needs of the student in the least restrictive environment.

     

    As the article indicates, the system is far from perfect. But it is no longer the case that education agencies can simply exclude students with disabilities on the ground that they are the parents’ responsibility. Educating all children is society’s responsibility.

    1. Matt Williams

      I agree that that level of inclusion is indeed a very good change Eric.  My point was not focused on inclusion/exclusion, but rather medical appropriateness of school district employees practicing medicine or not.

      1. Eric Gelber

        You may be using an over broad definition of practicing medicine. Diagnosing and assessing educational needs, and providing special educational and related services to, a student with autism is not practicing medicine, even if physicians, nurses, psychologists, speech therapists, physical or occupational therapists, etc., are included in the process. These professionals may or may not be district employees.

        1. Matt Williams

          Diagnosing and assessing educational needs for a child medically diagnosed as autistic . . . absolutely.  Assessing a child’s medical condition and delivering a diagnosis under the ICD-10-CM code of F84.0 . . . not so much.

          I suspect that the school district’s malpractice and liability insurance carrier would be unhappy if school district employees delivered such a diagnosis code as well.

  3. Matt Williams

    Aaron Wright said . . . My question is what is the mechanism that put Max in that school?  Why was Max not able to be educated alongside his non-disabled peers here in Davis?  Why was his mother forced to put him on some kind of public transit, ship him 90 minutes away from home?

    There is a fundamental problem with not allowing those kids in town.  There is an implicit if not explicit (implication that) those kids do not belong in our classrooms.

    I concur with Aaron’s initial question especially given the 16.5 to 17 percent incidence he cites for students needing special education due to their qualifying disability.  It seems like that is enough critical mass to warrant provision of those services here in the community’s school district.  He appears to be asking the right question when he says “Why in a town where there’s GATE/AIM program, an entire campus dedicated to Spanish Immersion, at least half of a campus dedicated to Montessori education, why is there not a program for autistic kids in this town?”

    The question that isn’t answered for me is whether having those special education programs provided at a single campus, or distributed throughout the campuses is the best approach.

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