When it comes to autism and mental health, stigma and discrimination play a huge role

Autism Alliance of Michigan was founded with the vision that people with autism will lead lives that meet their greatest potential. We lead efforts to raise expectations and expand opportunities for people touched by autism across the lifespan.
Connect with an AAoM Navigator at www.autismallianceofmichigan.org.

Being autistic does not mean a person cannot experience good mental health. However, studies have shown that 78% of autistic children have at least one mental health condition, for example, anxietydepression, obsessive-compulsive disorder (OCD), or eating disorders. Looking at autistic adults, Research charity Autistica found that seven out of ten have a mental health condition. Other research has found that 14.4% of autistic people experience depression at some point in their lives, 22% report having lived with anxiety at some point, and up to 7.9%  have eating disorders.

Autistic people may have difficulty understanding other people’s feelings and expressing their own. They may feel stressed by sensory experiences, such as bright lights, loud noises, and crowded spaces or anxious when familiar routines are upended. They also may process information more slowly. These reactions can make them targets of hurtful comments, exclusion by peers, or even bullying. All of these contribute to stigma and discrimination, putting an individual at higher risk for mental health issues.

Katie Oswald believes stigma and discrimination occurs often among autistic adults. On the autism spectrum herself, she serves as executive director of the Full Spectrum Agency, which provides peer to peer support for autistic adults. Oswald is an advocate for the Autism Alliance of Michigan’s MiNavigator program.

“Primarily what I see impacting our mental health is how we are treated in society by others. I think people don’t mean any harm, but they just don’t understand autistic ways of being. And we’re not accepted as normal. So, we have a lot of misunderstandings in school and the workplace,” she says. “The severe depression that I see in a lot of my peers — I think that comes from that feeling of being rejected by society. It’s a struggle to get through school when you feel significantly different from others. That’s not a unique experience to autism, but it is significant for us.”

Oswald explains that autistic people have a different interpersonal communication style than people who are not neurodivergent.

“A lot of times there’s misunderstanding because we communicate very directly, and we find that other people don’t,” she says. “We’re often blamed for creating that misunderstanding, when it’s really a two-way street. Being treated like we’re not normal is damaging.”

That “not normal” label may also prevent people from seeing the strengths that autistic people often bring — heightened creativity, higher ability to focus, persistence, and being more accepting of other people.

“Our autistic brains interpret a lot of detail about our surroundings. And people don’t understand that,” Oswald says. “Sometimes, it’s more than we can handle. We are compelled to push through when we really do need a break. A lot of that overload comes from the sensory differences that I experience. That creates a lot of anxiety and can be damaging to a person if it becomes a chronic overload.”

Katie Oswald

Autism: Disability versus identity

It’s important for others to understand that as a spectrum, autism can present very differently for each person. Individuals with profound autism, for example, those with significant intellectual disabilities, complex needs, and a need for high support will require a medical diagnosis to receive many services and qualify for public benefits. In these cases, the medical model of diagnosis and intervention is appropriate. However, for those with fewer support needs, who are able to live  independently, viewing neurodivergence through an identity versus disability lens may be more appropriate.

Autistic people with lower support needs can still encounter barriers to getting help for mental health issues, especially delays to those services. Additionally, not all therapists provide accommodations for autistic patients or have training that emphasizes autism as simply a different way of being rather than an affliction.

“A lot of us view our autism as a part of who we are, rather than our brain being disordered in some way. We view it as more of an identity,” Oswald says. “Therapists approach it as a disorder rather than an identity. I think the peer-to-peer support model is the best. But I also am looking for therapists who have empathy and compassion for people who are different and the willingness to learn about autism as an identity and not a set of deficits.”

Oswald has compiled a list of therapists who work well with autistic patients for the peers she works with.

“I want to see that their approach is neurodiversity affirming and not coming at it from this idea of ‘Let’s fix you,’ because that’s what has caused significant damage in the first place to a person. I have been working on that list for over three years. I have 20 or 25 people on the list. It’s a slow, slow process.”

Full Spectrum Agency offers a Meetup group for autistic adults that currently has more than 1,500 members. All autistic adults are welcome, verbal and nonverbal. Oswald also works with AAoM Navigators, like Aminh Kurdi, AAoM navigator specialist, who helps autistic adults as well as families with autistic children connect to autism-friendly resources, including mental health supports.

“Individuals are finding out later on in life that they are diagnosed with autism. That’s where it gets tricky. There’s not a lot of professionals that have familiarity with working with adults with autism. And as those younger individuals become adults, there is a gap in service delivery,” Kurdi says. “AAoM’s Navigators cover the entire state of Michigan, Lower and Upper Peninsula. We are a great resource to come to when you’re starting off looking for that initial diagnosis, to gain those ancillary support services, or you’re just needing some guidance.”

Communication with the autistic family member about their needs is paramount.

Helping autistic children cope

When it comes to children, Kurdi explains that people don’t always understand that autistic kids are having such a different sensory experience in the way that they’re seeing the world.

“Our brains see the details first and then move towards the big picture,” Kurdi says. “That’s where that hyperfocus comes from, which can be a blessing and a curse. It’s really a different way that our brains work.”

This is why autistic kids might need more frequent breaks and not be expected to just go along with what the family is doing. Communication with the autistic family member about their needs and their needs for recovery time are paramount.

“Parents want what’s best for their kids,” Kurdi says. “But I think there’s a little bit of unwillingness to slow down the activities and make those adjustments that maybe don’t seem reasonable to them but might be needed for the autistic child.”

Kurdi emphasizes the need for all children, and especially autistic children, to feel understood, have a safe space, and know they have a trusted adult they can turn to —whether that’s a parent, a grandparent, a teacher, a counselor, or someone else that feels safe. Autistic kids also need those physical spaces where sensory input is not overwhelming.

“It’s also important to have plans in place. ‘This is what we’re going to do if this happens — like a meltdown plan,” Kurdi says. “Maybe the child needs a time limit on the meltdown or a safe space where it can happen.”

Advocacy for autistic children and adults is starting to make a difference. As more of the general population understand how autistic people see, feel, and interact with others, hopefully acceptance and friendship will replace misunderstanding and discrimination. And as more mental health professionals learn how to create accommodations for autistic clients and realize that mental health issues are more likely the result of how that person has been treated rather than a symptom of neurodivergence, more autistic Michiganders will find the mental health support they need.

As Oswald says, “The more of us speaking up for autistic differences and autistic needs and what that means, the better things will get.”

To learn more about AAoM’s MiNavigator Program and get connected with a Navigator, click here to visit  the AAoM MiNavigator page.

Estelle Slootmaker is a working writer focusing on journalism, book editing,  poetry, and children’s books. Contact her at Estelle.Slootmaker@gmail.com.

Photos courtesy AAoM.

Autism Alliance of Michigan was founded with the vision that people with autism will lead lives that meet their greatest potential. We lead efforts to raise expectations and expand opportunities for people touched by autism across the lifespan.