CONSULTATION on autism

Considerations in Autism Support Consultation
by Lisa R. Macafee

Considerations in Autism Support Consultation

This paper addresses issues of consultation in autism advocacy efforts.  Included topics are challenges, strategies for support, and legal and ethics issues around neurodiversity.  I have been giving workshops for faculty and staff on how to better support autistic college students as as an autistic counselor myself.  As a note, autistic person and person with autism are used interchangeably throughout this paper.  While person-first language (person with autism) is preferred in much of the disability community, among the autism rights community, identity-first language (autistic person), is often preferred because autism is a core part of our neurology and defines who and how we are.

Background

Autism is a neurological difference that sets autistic people apart from the neurotypical population.  By common estimates, autism effects about 1 in 50 individuals (some estimates say 2.2% of the adult population!) and is characterized by social-emotional challenges in communication with neurotypical people, special interests, and rigidity of routines or habits that significantly affect their ability to function well in work, school, or their personal lives (National Institute of Mental Health, 2022).  Autistic adults face a decreased life expectancy, higher suicide risk, higher rates of comorbid conditions and mental health challenges, higher unemployment, and more financial hardship (Djela, 2021).  Autism is underdiagnosed in women and girls, those with less support needs, and adults due to differences in presentation and diagnostic criteria geared towards young boys (Murphy, Broyd, 2020).  Most autistic people are adults who do not have an intellectual disability and most autistic adults are unlikely to be diagnosed.  In one study, every participant who identified as non-binary was also autistic, implying a possible gender flexibility within autism.  Both individuals who are self-diagnosed and those who have clinical diagnosis experience similar barriers and challenges with no significant differences, implying that individuals who self-identify as autistic should be treated as such (Doherty, Neilson, O'Sullivan, Carravallah, Johnson, Cullen, Shaw, 2022).

Quality of Life Challenges

It is an unfortunate fact that autistic individuals tend to have a much lower quality of life than the typical population.  One major factor in this is a lack of inclusion in society, even more so than individuals with a physical disability.  This lack of inclusion is often perceived to be cause by others not understanding autistic people and misappropriating behaviors to meanings that are untrue.  Many autistic people feel as though they are not respected by society and the lack of understanding around autism contributes to their exclusion and perceived discrimination.  Autistic people often face increased social stressors and lack of both formal and informal support, which can lead to the increased mental health challenges experienced by autistic people.  Many autists struggle with sensory overload, a situation where the person gets overstimulated by sensory input and has a decrease in functional ability as a result.  Autists often experience barriers to accessing services because they have not been designed to accommodate to sensory needs.  (McConachie, Mason, Parr, Garland, Wilson, Rodgers, 2018).   Autistic people have a 16-30 year lower life expectancy and tend to experience barriers to health care access that contribute to lower physical and mental health when compared to the neurotypical population.  The biggest barriers for autistic people to access health care were trying to decide if their symptoms were severe enough to deserve care (72%), aversion to using the phone to make appointments (62%), feeling like the offices they contacted did not understand them (56%), and having the waiting room be an uncomfortable experience (51%) (Doherty, Neilson, O'Sullivan, … 2022).

Autistic adults face underemployment or unemployment at much higher rates than the general population and other disabled populations.  In the UK, only 16% of autistic adults are employed full-time, 32% are employed in some manner, and 77% of autistic adults are unemployed, with a majority of those desiring meaningful employment and unable to attain it.  Having meaningful employment is a key metric to qualify of life and fosters the feeling of belonging, social support, and inclusion.  Disabled people in general are paid 11% less for men and 22% less for women and are twice less likely to be in management roles.  70% of autistic adults report being bullied by someone they considered a friend, making workplace interactions more stressful.  Neurotypical people show evidence of subconscious bias when evaluating autistics, and that bias worsens when they know of their autism diagnosis (Djela, 2021). 

General Considerations

Autistic individuals benefit from having support people who understand their common challenges.  Some strategies that can help when working with autistic people is to be direct, speak clearly, and avoid open-ended questions that could lead to confusion as to what response is expected.  Autistic people often take longer to process oral language, may miss non-verbal communication cues, may be offput by people who speak very loudly, wear strong scents, or touch others in communication.  If people can be patient, decrease their perfume or cologne, not touch others without asking if this is acceptable, and speak at a clear but not too loud voice, this can help an autistic person immensely.  Autists can be very literal, so avoiding sarcasm, irony, or figures of speech can help make communication clear and effective.  Many autistic people find no use for small talk and may not respond to conversational inquiries along those lines.  Autists may also demonstrate a lack of non-verbal communication and can sometimes be described as having a flat affect, but this does not mean they are unengaged.  Often when experiencing strong emotional response, an autistic person’s face may be completely blank.  By the same token, some autistic people find it easier to focus on what is being said if they do not look at the person speaking, so it may appear as though they are not paying attention when they are doing their best to listen.  Due to missing some social cues, autistic people can sometimes be blunt or ask questions that others find inappropriate.  A calm statement can help direct the conversation elsewhere, but it helps to know that this behavior was likely not done from a manipulative or harmful intent (Cooper, Gale, Langley, Broughton, Massey, Hall, Jones, 2022).

Predictability can help an autistic person feel more comfortable and reduce unwanted stress.  Routines can be very helpful and knowing in advance what to expect can reduce anxiety.  By the same token, changes in expectations can be difficult and produce anxiety.  For appointments, it can help to let the autist know if an appointment will be running late and to ask for and provide desired accommodations such as a quiet waiting area, dimmer lights, or waiting outside to prevent overstimulation, stress, and possible shut-down of ability to process information.  If an autistic person does experience a shut-down, guide them to a quiet space in which to recover.  Some autistic people prefer online modalities when compared to face-to-face to avoid crowding and environmental concerns, it helps to offer flexibility in service delivery depending on what the individual might find most helpful. (Cooper, Gale, Langley, … 2022).

It helps when viewing autism accommodations to view autism as a disability in the same way as a physical disability.  Blaring loud music or making autistic people engage in phone conversations to access services is a similar barrier as not having a ramp for a wheelchair user because it creates an environment that autistic people cannot access without significant difficulty.  For autistic people to be supported in our society, we need to be aware of sensory sensitivities, provide alternate methods of receiving services, and be mindful of what purpose things serve.  If background music is preferred at an event, how loud does it really need to be?  Could it be turned down so that people with sensory sensitivities could still attend?  If an office has traditionally relied on phone appointment services, could they liaise with tech support to create an online booking system for students who are aversive to making phone calls?  Simple changes can be made in business practices to make environments more accessible and inclusive (Doherty, Neilson, O'Sullivan, … 2022).

Much of the current “support” for autistic individuals focuses on teaching them to look neurotypical and to mask, often at the expense of their mental health.  Autistic coping mechanisms, often called stims, are often discouraged because they may appear unusual without providing an alternate method of stress reduction, causing autistic individuals to be told to act in certain acceptable ways that are unnatural to the autist, not to act in ways that calm them, and not given any method to reduce the anxiety that often builds as a result.  There is often a catch-22 for autistic adults in disclosing their diagnosis.  On the one hand, they could request appropriate accommodations that could make their ability to function and enjoy life much better.  On the other hand, they may face discrimination from people who do not understand what autism is and have internalized negative perceptions about autistic people.  When an individual does disclose, 35% receive unfavorable discrimination or treatment.  Non-disabled individuals over-estimate their understanding and acceptance of disability, which contributes to negative treatment and invalidation of the autistic person’s needs.  Many autistic individuals mask in an attempt to appear more typical, but this ability to mask is impacted by stress and negative conditions and masking takes a toll on autistic people’s mental health (Djela, 2021).

Minor accommodations can be made that fit into a universal design framework benefiting all individuals.  For example, if our workplaces and schools can be not just aware of but accepting of different ways people present themselves and remove the self-perceived need for autistic individuals to mask, that would remove a large degree of stressors on autistic people to present as neurotypical while also welcoming people of different cultures to style their hair and wear clothes that they feel most comfortable in.  The pressure to conform harms many people from different religions, LGBTQIA2+ identities, and racial backgrounds, not just autistic people.  Specific inclusion of neurodiversity and autism into “diversity” trainings along with teaching about autism without a fear-based mentality can help advance inclusive practices (Djela, 2021).

It is often difficult to recognize undiagnosed individuals because they commonly mask their autistic traits after being rejected or disapproved of, often smiling, making consistent eye contact, and being exceedingly careful or apologetic.  Most autistic people mask, sometimes called camouflaging, to some degree unconsciously to conform to expectations, but this masking takes great effort and is exhausting.  Some factors in recognizing autism in an undiagnosed individual are recognizing co-occurring conditions of ADHD, anxiety, depression, migraine, eating disorder, PTSD, sleep apnea, gastrointestinal disorders, epilepsy, hypermobility, fibromyalgia, OCD, and autonomic dysfunction as factors that may signal autism as well.  These individuals can often recall experiences from their youth where they felt ostracized, bullied, or like they did not fit in.  Many autistic people experience challenges with executive functioning to manage daily life tasks and may be perpetually late and apologetic or rigidly early to minimize anxiety about being on time.  Individuals may be more direct than others find appropriate and may take more time to process information and need more questions answered before they feel confident moving forward with directions.  Autistic people are much more likely to identify as LGBTQIA2+ when compared to the general population, perhaps due to a lack of internalized gender roles and expectations.  It is often the case that autistic people do not experience communication barriers with other autistic people and may find communication with these people easy and intuitive, while communication with neurotypical populations are draining and overwhelming, and autistic adults may turn to drugs or alcohol to cope with this stress.  Other signals may be hyper-sensitivity to sensory stimuli such as lighting, sounds, scents, and clothing, family members with an autism or ADHD diagnosis, and pervasive fatigue, especially following social engagements.  It is important to address an autism suspicion with the individual in a sensitive and accepting manner.  For people interested in exploring more, they may take the Autism Spectrum Quotient, a 50 question online screening tool that will identify autistic traits and note if they are likely to be autistic and benefit from further analysis.  One thing many autists find helpful is in connecting with the autistic community for support and acceptance from other autistic individuals (Bradshaw, Pickett, van Driel, Brooker, Urbanowicz, 2021).

There is a correlation both in non-binary and transgender individuals having higher autistic traits and in autistic individuals being more likely to identify and gender nonconforming.  Researchers have theorized that this is due to autistic people not internalizing gender role norms, having more biological traits of the opposite sex assigned at birth, or autistic traits and sensitivities causing individuals to present in gender atypical manners, for example, boys wearing skits to avoid an uncomfortable sensation that wearing pants may cause.  Individuals who are members of multiple marginalized identities often have increased anxiety, stress, and depression compared to those who are either autistic or transgender.  The most elevated identity for autistic individuals was in identifying as non-binary.  This is theorized to be due to an autistic resistance to social conditioning, less concern for social norms, and a rejection of the binary gender dynamic (the idea that there are only two genders that are fixed at birth as determined by external genitalia).  Those autistics assigned female at birth were the most likely to identify as non-binary, which may also lend weight to cultural misogyny influencing those assigned female at birth to not want to exist as representatives of a subgroup most discriminated (Walsh, Krabbendam, Dewinter, Begeer, 2018).

Education Challenges

Autistic individual fare worse than other individuals with disabilities in post-secondary education outcomes, are less likely to live independently, were more likely to live with parents, and had the lowest percentage of friendships of all disability groups.  For those autistic adults who were living independently, there were issues of intersectionality and privilege that played into their independence as they tended to be White, need a lower level of support, and be from higher income backgrounds.  Students exiting high school in the United States are supposed to have transition planning provided to them through their school systems, but one-third of autistic students do not get a transition plan, and of those that do, only 25% of parents thought the transition plan actually helped their child.  Compound this with the fact that parents of autistic children had less expectations for their children for post-secondary education when compared to parents of children with other disabilities.  There is an unfortunate lack of evidence-based practices to support autistic students exiting high school (only 2% of autism research focuses on adult issues), leading to improvised plans that may or may not benefit the student (Ruble, McGrew, Toland, Dalrymple, Adams, Snell-Rood, 2018).

Transition planning for autistic individuals exiting high school and entering adulthood can be improved dramatically by implementing evidence-based practices and creating individualized plans for each student depending on their abilities and functional limitations.  Autistic adults can live meaningful and productive lives at whatever level of function they have available to them, with families and support professionals enabling access to this quality of life be removing barriers to education, employment, medical care, and inclusion in society.  Because each individual with autism may have varying and disparate needs, it is crucially important that transition planning for autistic adults is individualized to their specific needs and strengths.  Emerging autistic adults may need extra support to learn how to drive or use public transportation for individuals with disabilities, attend college using accommodations, acquire Medicaid, and get approved for Social Security Disability Income, but these are all things that once done, can improve quality of life substantially.  Autistic people should be involved in creation of their goals to ensure that goals are meaningful for them to attain personally.  Autistic individuals are less likely to be motivated to meet a goal that is not a personal draw for them.  While it may be more challenging to provide appropriate supports for autistic individuals, by working with the autistic person and their families, these plans can be created to enable autistic individuals to improve their quality of life (Ruble, McGrew, Toland, … 2018).

Mental and Physical Health Challenges

One area that could be immediately beneficial to autistic adults is for mental and physical health care providers and other support professionals be better trained at recognizing signs of autism.  There is a stereotypical version of autistic adults perpetrated by movies like Rain Man that give people a biased understandings of autism that presents in a one-dimensional formula not representative of a majority of autistic adults.  This misunderstanding has caused many autistic adults to miss a diagnosis, be misdiagnosed, and suffer increasingly negative mental health outcomes the longer they go undiagnosed.  Those who most often miss an autism diagnosis are women, people of color, those with high intelligence and lower support needs, and are often missed due to an ability to mask.  Whether diagnosed or not, most autistic people struggle with employment, education, relationships, finances, and physical and mental health that can be improved with accommodations and understanding of autism.  By recognizing autism in atypical presentations, support providers may be able to provide appropriate support and guide autistic adults to address the specific challenges and barriers they face with greater insight (Bradshaw, Pickett, van Driel, Brooker, Urbanowicz, 2021).

Challenges in the Prison System

One area where evidence misunderstandings of autism cause harm towards autistic individuals is in the criminal justice system.  While autistic individuals are shown to commit crimes at a comparable or lower rate to the general population, autistic individuals are overrepresented in the prison system.  This may be due to several factors.  First, autistic people are more likely to get caught, admit guilt, and plead guilty for crimes they commit, and are often less able to advocate for themselves in court.  Second, it’s possible that autistic people who do engage in criminalized activity engage in activity with more serious consequences, possibly due to increased mental health comorbidity.  Last, it may often be the case that autistic people are sentenced more harshly due to bias in the courts, and once incarcerated, a lack of autism-sensitive care while interned may extend time in the system due to infractions committed by the autistic person while imprisoned (Chester, Bunning, Tromans, Regi, Langdon, 2022).

To address inequities in the prison system, it will be beneficial to identify people with autism and, provide diagnosis services.  Autistic people in prison are much more likely to experience bullying and exploitation.  Fear of social interaction may lead to a higher level of social isolation and autists are more likely to be placed in isolation as punishment for outbursts, disobedience, or rude behavior resulting from stressors they experience.  Unpredictable changes in prison routine may cause stress.  Screening for autism and training for prison staff will benefit autistic individuals to have a more holistic and person-centered support system.  For proper care to be administered, it would be helpful for collaboration and consultation between prison staff and mental health experts to develop systems to identify incarcerated individuals who may be autistic, assess them, and provide appropriate supports to incarcerated individuals with autism (Newman, Cashin, Graham, 2019).

Training Recommendations

Voluntary and inclusive training on autism is beneficial.  Training aimed at increasing empathetic understanding can support individuals to understand the challenges faced by autistic people and support improved interpersonal communication.  When people understand why a behavior is occurring, they are often able to be more patient and offer more functional support.  People often have incomplete understanding of autism or misunderstandings about autistic behavior and why individuals experience the challenges in the way they do.  Understanding that autism is an integral part of who the person is that cannot be “cured” can help people re-frame how they approach communication with and support for autistic people.  Another aspect of training that people tend to find beneficial are case studies or examples that can humanize how autism may present in a person (Murphy, Broyd, 2020).

One of the best ways in which to influence individual mindsets to reduce bias is personal contact.  While this is difficult to do so, this is one of the main reasons that I have started speaking openly about my experiences as an autistic person.  People can intellectually understand data and evidence promoting more inclusion of individuals with a disability, but it’s understanding an individual person that can truly shift the foundational core of a person’s bias.  Highlighting autistic strengths can be a useful strategy to increase inclusion.  For example, autistic people tend to be honest to a fault, hardworking, reliable, write articulately, provide humor, camaraderie, and support, and be methodological in task completion.  While in-person networking is not a strength, autistic people tend to excel in electronic media channels and online networking.  Autistic people often approach problems with outside-the-box thinking and are innovative and creative problem-solvers while seeing the big picture, systems-level analysis in ways others do not.  If autistic individuals are employed in areas relating to their special interest, they may work with a rare devotion in their field (Djela, 2021). 

Conclusions

There is often a gap of information and interest between researchers on autism and the needs and interests of families and individuals with autism.  This gap leads to information being presented by the research community that may not be of merit to the autistic community.  In addition to this, many autistic people experience stigma from society and they and their families often experience frustration with a lack of effective supports that directly improve well-being, adaptive skills, and resiliency for autistic individuals (Gauld, Maquet, Micoulaud-Franchi, Dumas, 2022).  It is my goal as a consultant to try to bridge the gap between community needs and researchers to bring research-based strategies and supports that are functionally useful for autistic individuals and their families.

References

Bradshaw, P., Pickett, C., van Driel, M.,L., Brooker, K., & Urbanowicz, A. (2021). Recognising, supporting and understanding autistic adults in general practice settings. Australian Journal of General Practice, 50(3), 126-130. Retrieved from http://proxy1.calsouthern.edu/login?url=https://www-proquest-com.csu.idm.oclc.org/scholarly-journals/recognising-supporting-understanding-autistic/docview/2515193430/se-2

Chester, V., Ms, Bunning, K., Dr, Tromans, S., Dr, Regi, A. P., & Langdon, P., Professor. (2022). The prevalence of autism in the criminal justice system: A systematic review. BJPsych Open, 8, S45-S46. doi:https://doi-org.csu.idm.oclc.org/10.1192/bjo.2022.179

Cooper, M., Gale, K., Langley, K., Broughton, T., Massey, T. H., Hall, N. J., & Jones, C. R. G. (2022). Neurological consultation with an autistic patient. Practical Neurology, 22(2), 120-125. doi:https://doi-org.csu.idm.oclc.org/10.1136/practneurol-2020-002856

Djela, M. (2021). Change of autism narrative is required to improve employment of autistic people. Advances in Autism, 7(1), 86-100. doi:https://doi-org.csu.idm.oclc.org/10.1108/AIA-11-2019-0041

Doherty, M., Neilson, S., O'Sullivan, J., Carravallah, L., Johnson, M., Cullen, W., & Shaw, S. C. K. (2022). Barriers to healthcare and self-reported adverse outcomes for autistic adults: A cross-sectional study. BMJ Open, 12(2) doi:https://doi-org.csu.idm.oclc.org/10.1136/bmjopen-2021-056904

Gauld, C., Maquet, J., Jean-Arthur Micoulaud-Franchi, & Dumas, G. (2022). Popular and scientific discourse on autism: Representational cross-cultural analysis of epistemic communities to inform policy and practice. Journal of Medical Internet Research, doi:https://doi-org.csu.idm.oclc.org/10.2196/32912

McConachie, H., Mason, D., Parr, J. R., Garland, D., Wilson, C., & Rodgers, J. (2018). Enhancing the validity of a quality of life measure for autistic people. Journal of Autism and Developmental Disorders, 48(5), 1596-1611. doi:https://doi-org.csu.idm.oclc.org/10.1007/s10803-017-3402-z

Murphy, D., & Broyd, J. G. (2020). Evaluation of autism awareness training provided to staff working in a high secure psychiatric care hospital. [Evaluation of autism awareness training] Advances in Autism, 6(1), 35-47. doi:https://doi-org.csu.idm.oclc.org/10.1108/AIA-06-2019-0017

National Institute of Mental Health (2022). Autism Spectrum Disorder. Retrieved on 11/16/2022 from https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd

Newman, C., Cashin, A., & Graham, I. (2019). Identification of service development needs for incarcerated adults with autism spectrum disorders in an australian prison system. [Identification of service development needs] International Journal of Prisoner Health, 15(1), 24-36. doi:https://doi-org.csu.idm.oclc.org/10.1108/IJPH-11-2017-0051

Ruble, L. A., McGrew, J. H., Toland, M., Dalrymple, N., Adams, M., & Snell-Rood, C. (2018). Randomized control trial of COMPASS for improving transition outcomes of students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(10), 3586-3595. doi:https://doi-org.csu.idm.oclc.org/10.1007/s10803-018-3623-9

Walsh, R. J., Krabbendam, L., Dewinter, J., & Begeer, S. (2018). Brief report: Gender identity differences in autistic adults: Associations with perceptual and socio-cognitive profiles. Journal of Autism and Developmental Disorders, 48(12), 4070-4078. doi:https://doi-org.csu.idm.oclc.org/10.1007/s10803-018-3702-y