Rene Craft

As Interviewed by Elena B., March 17, 2018

Rene Craft: In Her Own Words

My name is Rene Craft, and I have a background in social media, public relations, and communications. And I have a journalism degree from the University of Texas. I have worked with the Autism Society of Central Texas -- which is now the Texas Autism Society -- for about 11 years -- ever since my son was diagnosed with autism.

My view on autism was very different before I had Jackson because autism used to be an extremely rare condition, and I had never ever met anybody with autism before. Also, when I was in public school in the 70s and 80s, people with autism were not allowed into regular classrooms, and so I never had the opportunity to ever meet anybody with autism in public schools. So, I was fairly shocked when my son was diagnosed with autism because I had no experience with it.

When people with autism go out into public, you canít quite tell theyíre disabled because there arenít any facial differences. The person looks like they should be acting ďnormalĒ but of course, theyíre different and so their brains are telling them to do different things with their bodies than our brains do. So, Jackson will flap his hands a lot, and make a lot of noises to himself, heíll giggle when nothingís funny to us, he will talk to himself a lot. He might get upset about something -- a conversation heís having with himself -- and so itís really hard to figure out what someone with autism is doing in public, and so that confuses people that donít have any experience with autism. So, we have gotten a lot of dirty looks. Weíve had people tell us to be quiet. One time we were swimming in a public pool and a man said, ďI donít want your weirdo kid to play with my children. Get away from us.Ē Thereís been a lot of times where either other children are mean or other adults are mean because they donít understand that Jackson is just trying to be friendly and he just acts different from what theyíre used to.

To me, itís a new civil rights issue. The disabled have civil rights. And, if people are not honoring those civil rights by giving them access to education or access to jobs, itís a silent discrimination because if they go and apply for jobs they may be totally capable of doing the job but they may act sort of socially odd to the person that would be hiring. I know thereís discrimination in employment because 90% of adults with autism are unemployed, when they can have graduate degrees and bachelorís degrees, that is not the unemployment rate of typical people. So, thereís obviously discrimination in employment, thereís discrimination in housing, thereís discrimination in school settings where parents have to fight for their kids to get access to a free and public education. Basically thereís discrimination everywhere against the disabled, particularly against a silent disability like autism.

I thought when he entered the public schools he would receive his free and appropriate education as guaranteed by federal law but because the school districts themselves are really strapped for cash -- and educating somebody with autism or a developmental disability is expensive because it requires additional staff people and it requires additional training and they didnít want to do that level of support and so thatís when I started advocating for educational change and educational inclusion. Really what they want to do with someone like Jackson even though heís super bright was put him in whatís called a self-contained classroom and he would never have a chance to be in regular classes, because it is more economical to have all the kids with autism just together than try to integrate them into the classroom. But they canít learn social skills if theyíre not integrated into the classroom. So my fight was always for Jackson to be able to be in regular classes with typical children and accessing the same curriculum that they were, despite the fact that he needed a lot of additional tutoring.

Jacksonís IEP is very specific to Jackson and to his brainís needs. So, it lists all the things that the general education setting has to provide him so that he can actually be accessing the material. So in the beginning before Jackson was kind of able to keep up on his own, he was required -- the school was required -- to both give him an aide and also to give him extra time to finish tests but also to reteach him skills that they didnít think he was getting in the regular classroom and also behavioral support. Autism is a lot about behavior, and speech. And he got speech therapy in the school. And so, without an IEP and without really holding the school to the IEP Jackson might never learn how to speak, his behavior might still be really quite aggressive. He needed the school to do their part. We have home therapies but heís in school so much the school has to do their part.

My next level of advocacy is with employers. Like, ďOh, you think that you can just not employ my son who is super smart. Thatís not going to happen -- youíre going to employ him.Ē So, I mean thereís nothing that legally says they have to, but if I feel heís discriminated against, then... basically, Iím just going to find him a good employment setting. And Iím going to work with them to accommodate him in a work setting.

One of the very first things I ever did was I went to the Capitol during the Autism Advocacy Day. During the session itís really important to go and tell your story to both your representatives, your senators, and anybody thatís on the Education or Health and Human Services Committees. So I would go around the halls of the Capitol with my little speech, and my little autism pen, I would, you know, give out my little freebies and say, you know, Iím here to tell you about autism and you know, here are the laws that weíre trying to get passed this session. That was in 2007. That year they were really really kind and helpful but then the recession of 2008 came. And then, itís been just pulling teeth since then. The best session I ever had was my very first one. So Itís good that it was good because itís been depressing ever since and I go anyway.

Recently the state was reprimanded by the Federal Government because the parents of Texas -- we took our cause to the Federal Government -- because the State so poorly helps people with disabilities in the public schools. So the Federal Government has basically said to the State, ďYouíre so awful in special education that you have to clean up your act.Ē And that was just us going to the federal level and complaining. The Federal Government is required to make sure all states are meeting the civil rights of their citizens. The state is supposed to be doing that and our state was not. We as parents knew they were withholding services that our students were legally entitled to and we did discover they had indeed illegally put a cap on how many people can have a disability in the state of Texas. They said that only 8.5% of students can have a disability. Well, thatís not how people are born. Thatís not how it works. You have to educate everybody that has a disability, but they were only educating 8.5% and then they would just deny and expect you just to sue them. So, itís wildly illegal. It was very depressing and disturbing and the state got into a huge amount of trouble, which I was shocked that the Federal Government did come down, and I gave testimony with hundreds of other parents saying that my child had not received all of the resources that he should have from the state, because they were just saying itís too expensive. It doesnít matter how expensive it is. Itís a child with a disability.

After the ADA Act of 1992 and then IDEA -- which is ADA in the schools -- those laws have been so important and every time that our current administration looks like they want to roll those back I panic and we all begin calling our senators and calling our representatives because without those legal supports then our kids would get kicked back out of school. A law that really helped autism was the 2010 Mental Health Parity Act and it was by Obama. That law said you can no longer discriminate against people with mental illness -- which autism is not a mental illness, itís a neurological disorder, but insurance companies are always trying to say itís a mental illness so they donít fund it and they wonít provide benefits or therapy for people with autism. Itís in the same category as addiction. Which itís not, itís a neurological disorder youíre born with but itís expensive and so the insurance companies hate to pay for services related to it. So, the 2010 Parity Act made it illegal to discriminate against anybody with a mental illness in the insurance world. And so I have utilized that when I have been fighting appeals with the insurance companies.

So I work with Autism Society because itís a parent driven organization but I also work with Autism Speaks which is an advocacy agency that helps to change laws. And I work with Easter Seals which also helps people with disabilities. And I have worked with the ARC of Texas and I have worked with Disability Rights Texas. Just all the different organizations that are focused on helping people with disabilities. Pretty much I want equal rights everywhere all the time right now. So, equal rights -- my advocacy follows my son. So right now heís in the educational system so I fight for educational rights. Soon heíll be seeking affordable housing because he has a disability so I will probably be involved in housing. Iím also looking at employment now because there are no laws that protect employment. Iím also looking at colleges because there are no laws that say you have to assist people with autism at college. So, itís just kind of -- I follow his needs and heís kind of in the first wave of people... Autism used to be a real rare disorder and now itís 1 in 68 boys so itís pretty common and the systems are not ready to take on this many people with autism. The systems werenít built for this many people who have autism. Theyíre not, you know, helping them.

I would also like for colleges to be required to accommodate more than they have to. I know theyíre private institutions. The public schools at least, the public institutions that receive public funding, like the state schools, they should be required to do more than they are doing for people with autism.

So, Jackson and I together watched a movie about Temple Grandin who is probably the most famous person with autism and Jackson has met her and sheís real impressed with him. He got to meet her at a little social gathering and we heard her speak at the Paramount Theater. But he watched that whole movie about her life and he thought, ďOh, she is a genius with animals.Ē