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Meeting the Needs of Autistic Adults

Meeting the Needs of Autistic Adults
Barbara Kornblau, JD, OT/L, FAOTA, Scott Robertson, PhD
November 11, 2019

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Overview

Barbara: First, I wanted to comment first about why our title is Meeting the Needs of Autistic Adults, and it is "autistic adults" and not any other way. Autistic adults, which Dr. Robertson will probably tell you more about, prefer identity-first language, which is similar to blind people and deaf people. They are autistic. I asked my son this morning about this, and his parting advice for me on this webinar was, "Mom, make sure you tell them that we're autistic. We're not people with autism." So, I have met my obligation to my son. He had a couple of other tips that I will touch upon later. The final thing I want to say before Dr. Robertson takes over is that we decided to do this together because we wanted to show both perspectives, an occupational therapist and an autistic adult, who is very involved in a lot of things. People seem to think that autism ends when school ends or when you turn 21. There are a lot of autistic adults that can benefit from the services of an occupational therapist. And, Dr. Robertson brings a lot of experience and can explain that perspective. I am now going to turn things over to him now.

Scott: I received OT services throughout elementary school from first grade all the way through fifth. This topic is very also personal for me as the field of OT has been of great benefit to me. I think that occupational therapists add a lot to being able to enhance life opportunities for autistic people in childhood. However, during this talk, we are going to have an emphasis on adult life.

  1. Define autism and describe demographics for autistic adults
  2. Examine common strengths and challenges
  3. Highlight findings from qualitative research studies focused on autistic adults
  4. Share OT strategies to improve participation for autistic people and increase quality of life
  5. Describe technological aids/devices and communication tools used by autistic people 

I want to give you a brief overview of the different sections. We are going to define autism and describe the demographics of autistic adults. We also want to briefly share common strengths and challenges, and I will say common and frequently because the strengths and challenges vary widely among autistic people. It is a very large population group and one of the most common cognitive disabilities in the United States and worldwide at 1-2% of America. Whenever we talk about things, we are going to say commonly or frequently, but again, there is a lot of variance and variability. Keep that in mind that all autistic people are different, and while we have a lot in common, there is a lot of uniqueness in each individual person. So, you have to think about how you can customize and adapt things for each individual you are working with, including if it is service supports and accessible and assistive technology.

We are also going to be highlighting some findings from qualitative research studies that were focused specifically on autistic adults and strategies from OT practices. Additionally, we are going to look at the best tips to improve participation and quality of life for autistic people, and describe how technological devices and communication tools can improve access to life opportunities. I am a big supporter of high-tech and low-tech supports as a person with three different degrees in computer science and related fields as it has been a big benefit to me. When I was an undergrad, they said that technology and computers were really going to enhance my life later on. This was also true when I was a kid. Back then, we did not exactly know how technology was going to transform the future, but many prophetic clinicians thought it would be of great benefit to me. This has been very true in my own life.

Defining Autism

  • Neurological developmental disability that originates in early childhood
  • The estimated prevalence of 1-2%+ among children, youth, and adults1
  • Core neurological areas of autism:
    • Language and communication
    • Social interaction and interpersonal relationships
    • Sensory processing and motor skill coordination
    • Executive functioning

I am going to briefly define autism, and like Dr. Kornblau, I will be using identify-first language. You should say autistic people not people with autism. Most autistic people prefer that language. In fact, there are several studies that have come out that state that most autistic people prefer that identity-first language because autism is a part of who we are or our lived experience. It is not something separable.

Autism is a neurological developmental disability that originates in early childhood and adolescence. It continues all the way throughout life, but it has a congenital aspect to it that begins when you are born. You grow up with it. Your challenges and strengths may change throughout life, but you are still an autistic person throughout life. This is particularly important for us to emphasize as the media, although this has gotten better in the last few years, has often portrayed autistic people as cute and cuddly children. As I say, this has started to change in the last five to 10 years, but it still has a lot of room to grow. Another issue is the lack of diversity shown in the media. Autistic individuals are often portrayed as white, three or four-year-old children.

The research literature and best practices show that autistic people come from all different walks of life. It is one of the most common neurological disabilities with a 1-2% prevalence worldwide. This means one out of every 50 to 100 people you meet are autistic. Research is still looking at that, and it is complex. This is especially true if we are looking at prevalence for adults. Even though it is a lifelong disability, there is not a lot of tracking that goes on after an individual is done with grades K to 12 so that makes it harder.

The core neurological areas of autism include language and communication, and social interaction and social relationships including friendships and relationships in work, school, and life. There are also issues with the processing of the five senses plus the vestibular system. Additionally, internal systems like temperature and pain, the muscular system and proprioception, fine and gross motor skills, and executive functioning like higher-order thinking may be affected. Again, there is a lot of variability with this. One example is motor skills. Some autistic people are great athletes versus, while some other folks like myself, struggle a lot and may have co-occurring dyspraxia. As there is this huge amount of variability, you need to find out what the individual's own specific strengths and challenges are.

Thinking Differently About Autism

When thinking differently about autism, you have to adopt a paradigm of atypical thinking about neurology. For example, I have a T-shirt that I like to show to folks at conferences and other places.

Figure 1. Scott's t-shirt.

As a computer person, this is like a pun for me. It is like being on a Mac computer and trying to interact with Windows. This is a very Windows dominated world mostly, especially in the business community. So, if you are a Mac user coming into the Windows community, it can be a little bit more challenging. You can take that paradigm and look at autistic people interacting with life. Life is designed mostly for people who are neurologically typical and who function just like the norm. We are only now beginning to see life in terms of the physical space, the social space, et cetera. Things are beginning to be designed better for people who have divergent neurology. And when I say divergent neurology, that means for autistic people. Our brain and central and peripheral nervous systems, including our legs and arms, are atypical or divergent from what you see from the norm. Perhaps, we will even see more research coming out at some point on spinal cord differences in autistic people as well.

Defining Autism in Adults

  • Neurological developmental disability that originates in early childhood and…
    • Continues into adulthood with lifelong challenges
    • May often go undiagnosed until adulthood
    • No one is suddenly autistic in their late 20s

Again, autism originates in childhood, but it is a lifelong condition. Many individuals go undiagnosed until adult life, especially since the science was not really strongly there for autism a few decades ago. Even 5-10 years ago, we did not have strong research literature. Now, there are thousands of books about autism, and it can be overwhelming for some families finding the right information as there is so much. Back in even the '80s and '90s when I was growing up, the library might have had five books on the shelf. My parents and a lot of individuals talk about how hard it was finding resources when their kid was diagnosed. And in my case, I grew up without a diagnosis in early childhood, and I did not receive a diagnosis until adult life. I self-identified in undergrad after taking a class where we talked about autism. We were discussing issues around consciousness, and the talk was focused on the journal, Minds and Machines. I received a clinical diagnosis during my doctoral studies when I was in my 20s. This is not uncommon. Many autistic people do not receive a diagnosis until adult life in their 20s, 30s, or later. In fact, some folks are walking around today who still do not have a diagnosis. It can be hard to get a diagnosis. You will see in Figure 2 that folks come from many different ethnicities, races, genders, ages, communication aspects, and socioeconomic statuses.

Figure 2. Diversity of the autistic population. ©MissLunaRose CC BY-NC-SA 3.0

  • Studies of autistic adults frequently contain small sample sizes or use convenience samples
    • It is difficult to identify autistic adults to participate in research once they leave K-12 and youth systems
      • (This also makes it difficult to determine true prevalence in adults……HHS is focused on 8-year-olds)
    • Existing studies are unrepresentative of the breath and diversity of the lived experience of autistic people
    • Studies do not capture the diversity of race/ethnicity, socio-economic status, gender/gender identity, etc.

What also hampers diagnosis and getting better supports for folks is that there are many limitations and weaknesses to the research data. Often, there are smaller sample sizes as it is hard to recruit folks for studies, both qualitative and quantitative. This is due to the fact that after K to 12th, individuals are not often in service systems. They also may not even have been diagnosed with their autism yet so finding folks is really hard. And, when you do research that is generalized to the broader population of autistic people, this does not help with a population that is so diverse. There can be vast differences in what support is needed, the types of communication issues, and social needs. There are also differences in both sensory and motor processing. There is even variability as the individual ages and encounters new experiences in life. An autistic person's needs may even change from day-to-day, or on a week or month-to-month basis, For instance, there can be mental health disabilities that develop due to ongoing stress and challenges in life. It has also not entered into researchers' minds how much they have to consider the variability of socioeconomic status, ethnicity, race, and communication needs. Many autistic people use augmentative and alternative communication, speech-entering technology, sign language, letter boards, picture boards, et cetera. And, many of these options have not been a part of the research for autistic people. For instance, folks with intellectual disability and co-occurring other developmental disabilities have often not been included in research studies of autism. So, this remains a challenge with the research literature. 

Demographics

  • Lower scores on common quality of life domains, especially for social inclusion2 for community living
  • High rates of unemployment and underemployment
    • Only 58% of autistic youth and young adults work for pay between age 18 and 253
    • Autistic adults often have atypical work histories with jobs of short duration4
    • Autistic people frequently lack access to needed employment supports and resources3
  • High rates of co-occurring disabilities/conditions
    • Mental health disabilities, such as depression (37%+)5
    • Chronic conditions, such as cardiovascular conditions6

Via some improved research over the last 5-10 years, we do know that autistic people have lower scores on common measures for quality of life, especially for social inclusion for community living, employment, and supports for being able to successfully participate in life and handle activities of daily living. Autistic people also have much higher rates of unemployment and underemployment. This is largely often because autistic folks may lack experience in employment growing up, with only 58% of autistic youth and young adults from the ages of 18-25. If they do not have that work history, it can make it harder for them to get jobs later on.

Autistic people also often have atypical work histories with jobs of shorter duration, like five or seven months, and then have challenges socially on the job or do not get accommodations for sensory and motor processing difficulties. Often supervisors are not trained on autism so they may not be able to provide good supports. Autistic people also often have high rates of co-occurring disabilities and conditions, such as mental health disabilities. Depression, for instance, is really high with more than a third of folks, about 37% from many recent studies, having this diagnosis. Anxiety is also really high. They can also have PTSD from a lot of challenges like being the victims of bullying growing up. And then, chronic conditions such as heart conditions, asthma, allergies, et cetera are also present. Some of these chronic health conditions have not been studied well among autistic people until recently. Some of this is also because autistic people find it more challenging to go to the doctors because that is both very heavily dependent on social communication skills and self-report which is really hard. Dr. Kornblau and I have previously presented on how autistic people can have trouble, for instance, reporting or expressing pain. It is not true for all autistic people, but it is true for a lot of autistic people. The vast array of medical testing can also be challenging for autistic individuals with sensory processing difficulties. This can be difficulties with lights, sounds, being able to be touched, et cetera. As you can imagine, this can be problematic in clinical settings.

Diagnosis in Adult Life

  • Accurate diagnoses in adulthood hinge on a solid understanding of childhood developmental history
  • Challenges linked to subjectivity of clinical interpretation of atypical behavior in individuals
    • No reliable biological tests (e.g., blood tests) exist to diagnose autism for the full diversity of the disability
    • Few clinicians have training on diagnosing autistic adults
    • Occupational therapists may be more tuned to atypical traits in autism->link to occupations and life functioning
    •  

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barbara kornblau

Barbara Kornblau, JD, OT/L, FAOTA

Barbara L. Kornblau, JD, OTR/L, FAOTA, DASPE, CCM, CDMS, CPE is an attorney, an occupational therapist, a certified case manager, a certified disability management specialist, and a person with a disability. She is a Professor, (working remotely) and Program Director of Idaho State University’s Occupational Therapy Program and a consultant to the United Spinal Association’s Pathways to Employment Program

Dr. Kornblau is a former Robert Wood Johnson Health Policy Fellow in the U.S. Senate, where she worked on disability issues. She is a Past President of the American Occupational Therapy Association and a past chair of the AOTA Commission on Standards and Ethics. She is the current Advocacy and Policy Coordinator of AOTA’s Rehabilitation and Disability Special Interest Section. As an attorney, she litigated cases under the Americans with Disabilities Act, involving discrimination in employment, state and local government services, and health care services. Dr. Kornblau has presented nationally and internationally and is widely published.


scott robertson

Scott Robertson, PhD

Dr. Scott Michael Robertson, an autistic adult, has led national efforts to increase life opportunities for autistic youth and adults through nonprofit leadership, service in government, and consulting on service system development. He has served as the Founding Vice President of the Autistic Self Advocacy Network (ASAN), a national nonprofit organization, and as a Public Member of the federal Interagency Autism Coordinating Committee. Dr. Robertson has collaborated on adult-focused autism research studies, published five referred journal articles, and presented nearly 200 presentations and trainings in his career, including 28 keynote addresses.



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