Positive Approaches Journal, Volume 11, Issue 2

K, Koffer Miller | 37-47




Positive Approaches Journal - Volume 2 Title

Volume 11 ► Issue 2 ► August 2022



A Conversation about Mental Health and Autism

Alice K, BS, CAPS & Kaitlin H. Koffer Miller, MPH


The following article is an interview between Alice K, a peer support professional with lived experience as an Autistic person in mental health and substance use recovery, and Kaitlin Koffer Miller, a researcher and regional manager of the Autism Services, Education, Resources, & Training Collaborative (ASERT) Eastern Region, discussing the gaps, challenges, and opportunities of supporting someone with an autism spectrum diagnosis as well as co-occurring mental health diagnoses.

Kaitlin Koffer Miller (K): What are some misconceptions about mental health conditions among autistic individuals?

Alice K (A): One of the most challenging misconceptions is that autism, mental health, and other co-occurring conditions could be understood as separate entities and therefore treated by separate providers and systems. Although each diagnosis can create a unique experience, I find that it is nearly always the case that one needs to be addressed within the context of the other. The multifactorial nature of human experience may seem like commonplace understanding in our field; however, the challenge lies within the fragmentation between our service systems. When seeking services, as autistic individuals with mental health challenges, we are then put in a position to attempt to split ourselves into fragments as well, with few options of providers that have the expertise to understand and treat us as a whole person.

Sometimes a misconception in developmental disability services is that presenting behaviors have only to do with autism. On the mental health side, challenges may be perceived as strictly due to mental illnesses. This can be damaging, because it leads to an erasure of one’s true lived experience and can sometimes feel very invalidating. The truth is that it is usually a mixture of both. Anxiety or depression symptoms can be present, but the ways in which they operate in the autistic brain can be different, which means different approaches are needed. Without addressing both at once, mental health interventions are often like putting a bandage on the symptoms without addressing the root cause.

For example, when addressing a history of social difficulties in therapy, I have often been met with a cookie-cutter approach focusing on challenging negative beliefs and calming anxiety symptoms, overlooking much of what was driving the challenges to happen repeatedly. However, when understood in the context of autism, these seemingly negative beliefs and anxiety are often valid reflections of our experience and dismissing them can cause us to be put into situations where we may be misunderstood, manipulated, or bullied, which then exacerbates the existing anxiety. This may be a case where anxiety would be best addressed by understanding the underlying autism-related experiences and needs. Along with stress reduction, some helpful approaches could include learning some interpersonal skills and scripts for self-advocacy, implementing boundaries, and working through complex trauma.

On the other hand, it is sometimes helpful to understand the difference between autistic differences and mental health symptoms. For example, when we talk about neurodiversity, we are advocating for an understanding that every mind is unique and valuable, and promoting acceptance of different ways of feeling, thinking, and behaving with no one way being inherently better than another. This can be complex when supporting people who are facing mental health challenges. Many times, there are true diagnoses that need psychological and psychiatric intervention. At the same time, so much of the distress often comes from marginalization and oppression, which can be best alleviated through acceptance, accommodation, inclusion, and human rights. In the service system, it is important to, as much as possible, avoid re-creating this traumatic experience for an autistic person, especially for those with multiply marginalized identities.

I have often witnessed people’s autistic differences be misunderstood and pathologized as mental health symptoms. For example, some individuals need to move their bodies frequently or speak to themselves to pay attention, process information, or regulate their nervous system. This does not necessarily mean that they are experiencing psychosis or need to be medicated for an anxiety disorder. Some other people may have a strong need for structure, order, or repetition. This may just be how their brain optimally processes information, and not necessarily indicative of obsessive-compulsive disorder (OCD). In fact, many people on the spectrum feel at their happiest when they can freely rock, fidget, spin, repeat words, or fixate on a topic. And we have the right to do what makes us feel happy and safe, even if it may seem strange or inconvenient for the conventional world. Of course, many times mental health conditions do exist, and deserve to be treated. I find that the best way to go about untangling this is to let the individual lead the way. If something is causing them distress, then listen to that and find solutions together. However, if it is not currently a problem for them, then it's not a problem for me. I believe in granting individuals the dignity of risk. This means that as much as we want to protect people from harm, we must weigh these risks against those that come with diminishing the individual’s sense of empowerment to make their own decisions. This often requires time and patience for both parties, so keeping an open mind, not jumping to diagnoses and solutions, and respecting individual autonomy are key.

There are also a couple of autism-specific phenomena that mimic mental health issues, which can cause confusion for both autistic people and their supporters. Language and understanding for these are newly emerging, largely from the autistic community online. One example is autistic burnout. Autistic burnout occurs when external expectations, like long hours of socializing, working, being overstimulated, and the like, don’t match one’s internal capacities and resources for an extended period. It can result in symptoms like chronic exhaustion and hypersomnia, social withdrawal, inability to communicate, and difficulties functioning in other areas. Sometimes this is mistaken for depression, and one is encouraged to be more active and social, when usually rest and alone time can be most helpful. The autistic stress response to change in routines or environments is another example. This is not a simple anxiety issue. In addition to traditional coping skills, it is helpful for mental health providers to recognize the need for and explore with the autistic individual what kinds of concrete support they might need to ease into the change.

Another thing that comes to mind is the conversation about high and low functioning. First, I believe it’s just not accurate or useful to categorize someone’s level of functioning in a generalized and static fashion. People will start out with higher or lower abilities in different domains. From there, these functioning abilities can fluctuate often based on internal and external factors, including mental health symptoms. The great impact mental health has on autism-related functioning can be confusing for supporters. It may appear that the individual is not making progress or perhaps resisting treatment, supports, and becoming antisocial or antagonistic. The truth is that if or when someone’s mood is very dysregulated, they cannot access the skills and functionality that they may have been able to access at another time when their mental health is in a better state. There is a need for services to be very individualized and flexible to address these fluctuations. For example, there may be weeks when an individual is willing and able to focus on community participation. But then there are other weeks when mental health struggles may be more paramount, and telehealth could be helpful to meet them where they are. It’s also important to presume competence. Just because there are days that I struggle to do a task, does not mean that I am never capable at all.

K:  What do you think about autism masking, anxiety, social situations, and the impact on mental health?

A: For me, I believe that masking and the lack of understanding of how autism presents in women in particular are a reason why I got diagnosed so much later in life. After years of unsuccessful therapy, I suspected I was on the spectrum, but I felt invalidated by those I tried to share these feelings with. I remember telling a psychotherapist about things I was experiencing that seemed to go beyond mental health to me, like differences in executive functioning, processing, and social skills and he insisted that they were due to depression. He said I was the most depressed person he had ever met but couldn’t come up with an explanation as to why it was so difficult to treat. He even said “Maybe that sounds like autism, but you don’t look like any of my Asperger’s clients that I have. You can make eye contact and hold a back-and-forth conversation. I don’t think you are autistic.” He then skipped over my concerns and did not recommend me for even an evaluation or follow-up with an expert.

The thing that many people don’t understand, is that just because I can do things like make eye contact, make small talk, quickly adapt to changes in routines, and the like, doesn’t mean these things are natural for me. I don’t necessarily have these functions as much as I perform them. This is called masking, which expends so much energy that it can take quite a toll on mental health. When that is compromised, I can’t mask as well and suffer social consequences that fuel further anxiety and depression. I feel that expecting individuals to mask and adapt to neuro-normative standards, which are present even in the structures of service systems, can negatively interfere with outcomes.

I understand the goal of psychotherapy as developing a deep understanding and relationship with oneself, which then leads to healthy relationships with the outside world. When forced to mask my autistic traits, I am in a constant state of trying to change who I am to appeal to what others need. It diminishes the ability to have a positive self-image and feel seen and valued in relationships with others. Masking is not something you can turn off; it’s a deeply ingrained way of being. So, how can you implement therapy with someone who is masking? When a person is not showing their true self? Or they don’t know who that self is? And how can we be expected to work on accepting ourselves when we feel like society doesn’t accept us?

Sometimes, with help, people can get to a point to where they can separate themselves from the mask, but often still intentionally must do so to get along in social situations, hold a job, or generally be treated well. But it can be exhausting. Draining that social battery can make it harder to engage in things that are good for mental health, like participating in activities, fostering relationships, and maintaining good physical health. Interestingly, I have observed that when autistic people interact with one another, whether it’s in a professional, peer relationship, or in a safe autistic community, they have much more energy and enjoyment in the experience. I’ve heard time and again, that it’s because the pressure to mask isn’t expected. For example, being able to stim, move around, talk about special interests, or take breaks without the need to explain ourselves, this can free up the mental space to be present and experience positive emotions. It boils down to being able to do things in a way that fits us and not feeling judged for it. Autistic peer relationships can result in much greater feelings of self-acceptance. Providers can also seek to adapt to some of the autistic person’s needs and preferences, and this sort of accepting relationship goes a long way in building trust enough to drop the mask and be truly seen, heard, and supported.

K: From your perspective in peer support and as someone with lived experience, what is most helpful in supporting those who have co-occurring mental health challenges?

A:  First of all, connecting on a human level is of ultimate importance. This means stepping away from the medical model and allowing the individual to be the expert on themselves. It is helpful, especially in the beginning, to get to know someone while dropping assumptions, ideas about pathology, symptoms, and diagnoses for a while to fully understand the individual and the way they experience the world. Autism and mental health issues are very complicated and very intertwined. Focusing too much on labeling at first is not entirely possible and can often lead to confusion and misdiagnosis. Often, autistic people have gone through the world being told that who they are, how they think and behave are wrong. Providers can be more effective if they focus on undoing this negative bias, rather than reinforcing it.

Flexibility in the way we deliver services and supports is also key. I’m often asked how I think a service or training should be changed for autistic populations. I always say, there is no one cookie-cutter approach, as we all experience autism uniquely. While there are some predictable accommodations that may suit most autistic individuals, like a sensory-friendly environment, the most important changes will have to be in terms of flexibility. Preparing for extra time is often helpful for autistic individuals. This can range from longer appointment sessions to allow for information processing and breaks, to longer timeframes for goals and service duration. It could also mean lowering the expectations for time spent on socially and mentally draining tasks. Thinking about the rapport building stage in the peer support model is a good example. While in a traditional peer support service, the general expectation is that it could take 1-3 months to make progress on a goal. I have seen it take 2 to 3 times longer in autistic people, with the first few months just building a rapport and getting to know one another’s communication styles before implementing action steps. Sessions spent on assessments and treatment planning often also must be broken up into smaller chunks.

The structure and environment of services can also really impact how autistic individuals respond. For example, sitting in an office for an hour talking face to face with a therapist may not work for everyone. It may feel uncomfortable and unnatural to a lot of people and prevent them from being able to engage and open up, whereas having opportunity for movement, periods of silence, or doing an activity could be more beneficial. The way to find out what works is to ask the person or help them communicate their needs in whatever fashion works for them.

Supporting autistic people and their related mental health can often feel challenging for providers. I promise you; it can be that much more challenging to live with. Although the task may seem daunting, I do also believe that effective supports led by and for the population they serve can bring about significant change. It can often require completely shifting one’s mindset and being open to thinking divergently with us. It can mean asking where our internalized ableism exists, and how to undo some of the oppression within our systems. I can also promise you that it can be well worth the time, energy, and patience required from all parties. I have seen amazing transformations occur when autistic people are treated with inherent dignity, worthiness, and value for who they are. I believe that by embracing neurodiversity, we help not only those with disabilities, but every human to accept themselves and slowly chip away at our masks, making us all a little bit more free.



Biography

Alice K is a project coordinator at the Policy and Analytics Center at the A.J. Drexel Autism institute. Alice is also a Certified Peer Specialist, Community Autism Peer Specialist, and spent five years providing direct support services. She is also a neurodiversity advocate, speaker, and trainer. She has served as a consultant, content developer, and training facilitator for the novel Community Autism Peer Specialist initiative in Philadelphia and has also facilitated several mental health-focused Certified Peer Specialist continuing education programs. She holds a bachelor’s degree in Behavioral Health Counseling from Drexel University.

Kaitlin Koffer Miller is the Regional Director of the Autism Services, Education, Resources, & Training Collaborative (ASERT) Eastern Region at the AJ Drexel Autism Institute. Ms. Koffer Miller’s work focuses in policy research as well as qualitative data analyses. Ms. Koffer Miller holds a master’s degree in Public Health from the Dornsife School of Public Health at Drexel University and is a doctoral candidate in Health Policy at the Dornsife School of Public Health at Drexel University.

Contact Information

Alice K, BS, CAPS

Project Coordinator

A.J. Drexel Autism Institute

Drexel University

ak3356@drexel.edu

Kaitlin Koffer Miller, MPH

Regional Director, ASERT Eastern Region

A.J. Drexel Autism Institute

Drexel University

kk629@drexel.edu