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.