April is Autism Awareness Month. Illinois lawmakers recently (April 3) announced that $26 million in grant funding for social programs would be suspended to help close a multibillion-dollar budgetary gap. Among the programs to lose funding is the Autism Program (TAP) of Illinois, a statewide network of 13 nonprofit agencies and four universities, including the U. of I. Linda Tortorelli is the Urbana campus resource coordinator for TAP, which is a collaborative initiative of the departments of special education, and of human and community development. Tortorelli spoke recently with News Bureau social work editor Sharita Forrest about TAP and the latest research on autism spectrum disorder.
What types of services does TAP provide, and what will be the impact if the state funding ends?
We are a community resource center and part of the Family Resiliency Center. We provide information, resources, training and consultations for parents, professionals or anyone interested in autism or working with people on the spectrum.
We are the only parent training and education facility in the Champaign-Urbana community, so when a child is diagnosed with ASD, the family is encouraged to call TAP.
Last year, we provided 270 consultations for parents and educators, and conducted training for 1,700 people, such as teachers, first responders and health care workers.
We also provide internships and educational experiences for U. of I. students.
Students gain experience working with individuals who have autism and their families through our resource center, and they provide support for children with ASD at University Primary School or by participating in our social skills group.
All of our services are free and are not billable under insurance or Medicaid. The state budget reductions targeted programs that don’t have Medicaid matching funds. We have enough money in our rainy day fund to carry us over until June 30, but all of our funds will be gone then if the grant is not reinstated.
What are some common misconceptions about autism?
Some people believe that vaccines cause autism. We have plenty of research that definitively says that vaccines do not cause autism.
Another common misconception is that poor parenting causes autism. We still don’t know what causes autism, but genetics and environment certainly are factors.
Most of the stories in the media focus on children who have autism, but how does ASD affect adults?
ASD is one of the few developmental disabilities where people can have normal or above-average intelligence but still be quite impaired. Everybody thinks that if you have a high-enough I.Q., you should be able to do whatever it is you want to do, and that just isn’t the case.
It’s very challenging for people who work with these individuals to understand how to help them compensate for their severe social cognition deficits.
I am working with a young adult who has high-functioning ASD and a master’s degree in engineering, but is unable to get a job because his social skills are so impaired that he is not able to get past the interview. We have seen computer geniuses who are unable to control their impulse to touch other people’s computers.
Because they were so bright, most of these people did not receive interventions as children. People around them had no idea how to address their odd or difficult social behaviors and hoped they would just outgrow these social challenges.
The research shows people with high-functioning autism aren’t faring much better in their adult lives than individuals who have more severe disabilities. More research is needed to figure out how to help them.
Our schools are making strides but still are a long way from helping these individuals obtain the social skills to be successful in the workplace. Many of the higher-functioning people with ASD are unemployed or under-employed.
Are there people who fly under the radar and don’t get diagnosed until adulthood?
I’ve had spouses come in and say, “I think my husband is on the spectrum,” and, usually, they are correct. I try to help them understand what might be going on. I had a very successful educator in his 50s come to my new-diagnosis group, and it offered a lot of hope to the parents of small children and teenagers with ASD who were in that group.
I had a woman in her 60s who received an ASD diagnosis, and it was revolutionary for her to finally piece everything together.
We are available and willing to help anyone with ASD, regardless of age. I have a group of professional women who came to me individually looking to connect with others who have ASD. They meet once a month to network and share their experiences.
We have had groups for teens and adults, and we support other professionals in the community who work with adults.
What might be important to know about working or living with people who have ASD?
People with ASD want the same things that everyone else wants – meaningful relationships, employment and involvement in their communities that contribute to a happy life. Have patience and be open to the unique contributions that people on the spectrum can make when you just take the time to get to know them and help support them so their special gifts can be realized.