July 7, 2021

January 16, 2023

Autism and Mental Health: Let’s scratch the surface

Content warning: mental health, anxiety, depression, trauma/PTSD

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One of the most elemental and crucial of human needs is the awareness and embracing of mental health care. Unfortunately, it’s all too often overlooked if not disregarded entirely, especially when autism is somebody’s primary diagnosis. For autistic individuals, the struggle to connect and thrive within a majority-neurotypical world that excludes them and presents challenges can feel insurmountable and lead to things like anxiety, depression, and trauma/PTSD affecting them most.

The long-term impacts are heartbreaking and costly: the rate of suicide is reported to be 3x higher for people on the spectrum, and anxiety and depression are the most common co-occurring diagnoses for autistic people.

These topics can be difficult and sensitive topics to discuss, but that is precisely why it’s imperative we discuss them. On July 9, we held a livestream discussion with Dr. Ben Russell and Haley Moss, hosted by Stacy Goebel. Our livestream intentionally featured clinical, self-advocate, and parent perspectives. We provided some answers to important questions surrounding the intersection of mental health and autism.

Below are a few highlights. For more, we would highly encourage you to watch the livestream itself or read the full transcript here.

Important Note: In this discussion, we speak to our own experiences. As Haley stated beautifully: “I can do the best I can to reflect things that I’ve commonly heard echoed, but I can only speak to my own experience.”

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What are signs to watch out for that someone you love is struggling with anxiety/depression/trauma/PTSD?

One of the most common things seen when depression or anxiety are increasing is withdrawal. Be aware of if your child or someone in your life has a shift and is withdrawing from interactions. That’s an important time to check in with them. Increases or changes in behavior can also be a very clear indication.

Haley: “Probably one of the biggest ones that I always noticed, at least whenever I was really stressed or I was beginning to have anxiety or my mental health wasn't where I wanted it to be at the time, is I would lose interest in the things that I really enjoyed. So for me, when I was really going through stuff or I was very stressed or I didn't feel like myself, I would stop drawing and painting. And that would be kind of this clue, ‘Okay, what's going on that Haley doesn't want to create right now?’”

And remember, a lot of people who have communication differences may not have the words to describe exactly what they are feeling. Especially with younger individuals or those who may have co-occurring intellectual disabilities, they might not have the vocabulary to say, "I am anxious” or, “I am depressed." They might just tell you that their stomach hurts, and that might be their way of saying, "I feel queasy because I am anxious or depressed."

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Why do these mental health struggles happen?

The constant strain of keeping up different coping strategies, mainly to get through the day, can have a devastating impact on many individuals with autism, especially when they’re young. Masking is something a lot of autistic people are taught from a very young age. Masking is the idea of trying to gain social acceptance by appearing more neurotypical – doing certain behaviors or suppressing certain traits.

Haley: “[As traumatic and anxiety-inducing as masking itself is], sometimes when you see less of that masking, especially in younger children, it can be an indicator that something’s going on, that the individual has less energy to do this thing that is harmful in the first place.”

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What can it feel like when mental health struggles reach crisis level?

Haley: “I know that for parents meltdowns are very, very stressful, and they're even more stressful for us. What compounds that stress is that we know that we're stressing you out and that you're worried. And it's like this big spiral of anxiety going on for everybody involved.

I know every time that I've had a meltdown, I would just try to hold it in and wait until I was alone, because I didn't want to stress someone else out. And then I would be in the middle of a crisis or feeling like my body was in a crisis. Because a meltdown is like a crisis. That's the best way to describe it.

It's not a temper tantrum, which I really want to distinguish. It is a complete loss of control…There's so much stimuli coming in, and your body just can't fight it anymore.

It feels kind of like a panic attack. That's the version of it that most neurotypical people can kind of relate to, because there are people who aren't neurodivergent who have had panic attacks before. They know that kind of loss of control, the heart rate, the crying, the feeling like they're going to die. That’s all a part of meltdown experiences too.”

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What are some tools that can work to help?

Having coping strategies and being able to move away from something when it is overwhelming can be a very healthy mental tool. For autistic individuals who struggle with identifying those emotions, they might need some direction. As the caregiver, consider what is a way that this particular person on the autism spectrum best takes in information. Then you can determine the best approach to help them begin to express, understand, and differentiate their own feelings.

Dr. Ben: “Just on a basic level of learning to identify, ‘What is anger? What is worry? What is sadness?’ If those feeling states are undifferentiated, then they become overwhelming to the child. They obviously can’t organize communication of, ‘I'm sad right now because mom went to work.’ So, they need patience and understanding. And so they need caregivers…to support them and help them make sense of it.

[Caregivers can also] narrate what they observe in the child and what it might be connected with. For example, "Oh, mom left, and now you're having a really hard time. I wonder if you're sad that mom left."

Haley: “I actually got through review a new workbook for teen girls on the spectrum. There was this thing called the emotion wheel on it. It started with these broad categories of feeling, like happy, sad, angry, etc.

And then you went up the wheel and it explained maybe when you said that you're angry, you're frustrated or maybe when you're sad, you're lonely – and you kept going up, until you hit a more detailed feeling.

So, it helped explore your vocabulary and what you were actually feeling in those realms.”

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Music is also a great way to calm the system and get it back in balance, with rhythm being an important factor in regulating the brainstem as well. There are also some mindfulness and breathing exercises that Dr. Ben walked us through during the livestream.

Ultimately what works can be very specific to the individual. So, we’d encourage you to try out some things and find out what works for them; or if possible, have a conversation about how to best be supportive during a time when everybody feels safe, calm, and collected.

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How can we take real action to help?

Have a calm discussion with the individual after the crisis has passed.

Haley: “I recommend that if you have kids that are able to explain themselves or autistic people in their lives who are aware of what's going on, when everybody is calm and it's not right after the fact, you have a discussion [asking them], ‘What feels good for you?’ or, ‘How can I help?’

Dr. Ben: “It's also not the same every time that you have a meltdown. Sometimes you need a room all by yourself, and sometimes you need a lot of pressure, and sometimes you need music. Sometimes you need a distraction and to just go work on your homework or something. So, just because getting a hug works 90% of the time, it doesn't mean that it will work a hundred percent of the time.

Be prepared to advocate for the individual, especially if a crisis or meltdown is happening in a public place.

Haley: I think it's important for parents and caregivers and loved ones alike to [advocate] on behalf of the individual who's currently experiencing that meltdown – to say, ‘Everything is okay, I have this under control.’ Even just that little, tiny script is enough to say, please don't get psychiatric services or law enforcement involved because that could possibly be dangerous in this situation because they might also not be equipped to deal with an autistic meltdown.

Do not post videos of meltdowns or other crises on social media. (linked article written by Haley)

Haley: Meltdowns are really traumatic, and our trauma should not be shared throughout the internet. I understand that you're trying to educate people, but also this could be really harmful for many, many different reasons. I understand the intent here, but also, I think it's important that we do respect our loved ones, no matter what. And I feel like it's very traumatic, especially for autistic people who see this kind of content. For most autistic people, it's very traumatic to see because you see other people in pain and their pain being shared widely. So, please try to be respectful of your child or loved one's privacy, unless they actually give you consent to share something like that.

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What are some resources that can help?

Search for autism support groups local to you.
Be aware of who in your current circle is a good resource and reach out to them.
Clinicians you trust‍
24/7 Crisis Line ‍
Autism Society National Helpline ‍
Crisis supports for the autism community (good resource for mental health clinicians and crisis line workers as well)

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You can see the full livestream here on our YouTube channel. You can also click here for a full transcript of the discussion. And if there’s anyone you think could benefit from this conversation today, we hope that you will hit the share button and introduce us to them. No matter what, nobody is alone in surviving life’s ups and downs, and autistic people who are at heightened risk of mental health related difficulties deserve to feel included, valued, cherished and loved like anybody else.

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