Perspective: To support autistic individuals with mental health challenges, support individual needs

Many autistic people experience co-occurring mental health issues. In fact, as many as 40% of autistic young people have at least one mental health condition such as a phobia, obsessive-compulsive disorder or social anxiety disorder that can affect their quality of life. 

As part of Mental Health Awareness month, we’re highlighting experiences recently shared by a group of autistic teens and young adults who participated in a discussion for the Kansas Leadership Education in Neurodevelopmental and related Disabilities (LEND), a federally funded training program at KU. The full panel discussion is available through LEND. 

Whit Downing, vice president of policy and programming for the Kansas Council on Developmental Disabilities, is an autistic woman who led the panel. She started the conversation by reminding viewers that autism experiences differ from person to person, and so do the challenges that go with it.  

“Just like autism looks different for every person, we’re not all the same,” she said. “The same is true when you experience mental health challenges.” 

A common theme during the discussion was the need for mental health support, particularly when dealing with intense moments.  

Downing said it can sometimes be difficult to understand her own reactions to be connected to feelings of anxiety. “Sometimes,” she said, “someone has to point it out to me.” 

Autistic individuals have reported experiencing an overload of anxiety that can make it difficult to manage their own behavior.  

Sometimes called an autistic meltdown, or more formally an autonomic storm, these moments can result from things including:  

• Hunger, fatigue or other unmet basic needs 
• Stress from social situations  
• Overstimulation of sensory input 

Conversely, some autistic people report a state of extreme withdrawal and disengagement called a shutdown. Panelist Kristianna described to the LEND group what it felt like for her when she is unable to function when overwhelmed. 

“It’s like a body shut down. I can’t move. And I can’t think,” she said. “A lot of times it feels like people expect you to be able to know and communicate what’s going on, and it can be overwhelming because in those moments, I can’t.” 

She said struggles to find the words she needs to advocate for or explain herself — even to answer whether she’s OK. So that her mother can support her, Kristianna said they worked out a plan to communicate a need to pause.  

“We’ve actually started doing something where, if I don’t actively need help, and she asks, that I’ll do a thumbs up. And then she knows to wait in what I call, ‘time silence.’” 

To support autistic people during these moments, experts also recommend that you:

• Avoid questions  
• Decrease stimulation 
• Allow access to comfort items if needed, such as weighted blankets, fidgets, or a favorite toy 
• Share that you support the individual without judgement 
• Allow time for the person to recover  

When the autistic meltdown or shutdown passes, it can help to practice strategies such as deep breathing that individuals can use before or during upsetting situations.  

During the LEND panel, panelist Aurora suggested a well-known five-step grounding technique that works for her: 

• Look for five things you can see 
• Find four things you can touch 
• Listen for three things you can hear 
• Find two things you can smell 
• Find one thing you can taste 

Kristianna wanted people with autism to know there’s nothing wrong with needing help and usually people want to help — even if they don’t know how. 

“I also encourage everyone to find their support system because there were times I would not have been able to make it through if it wasn’t for my friends, my family, my co-workers,” she said. “Having people who understand me [is important], even if it’s enough to just be silent with me until I find the words." 

For people who don’t have the support they need, she added that there are many organizations that exist to provide help and connect families to resources. In Kansas, these include: 

• The Kansas Family Support Center 
• Autism Society Heartland 
• Kansas Center for Autism Research and Training 

“If you don't have anyone that you can find right now that supports you there are people who work jobs that support you and would love to help you find the supports you need,” she said.