Crip Camp Conversations: Disability Leaders Respond to Coronavirus

https://www.youtube.com/watch?v=mXiI-5WV1RY

The Best Audience Chat Comment undoubtedly was

"I feel like my life will now be measured as “pre this talk” versus “post this talk”. Thank you for this!" 

Amazing experience being on the panel for this webinar. Glad to be able to add value to this very important issue. 

I got several requests to share what I'd "talked" about in the webinar. 

Here are the slides and transcript of audio. 

Introduction 

Image Description. Young Indian American male sitting in front of a laptop. Black hair. Wearing a cap and T-shirt that say Berkeley.

Hi everyone. Thank you for having me here. My name is Hari Srinivasan. I’m a non speaking autistic. I type to communicate. I have a bunch of other challenges like oral-motor apraxia, ADHD, OCD, anxiety etc. 

I’m a student at UC Berkeley with a major in psychology  and minor in disability studies. 

This is my third semester as student instructor for a faculty sponsored semester long class on autism. I think of it as a way to change awareness in the way 30 students each semester will come to view disability and autism in their future lives. A majority of the students are non-autistic and able-bodied. We had a very interesting discussion on autism and covid-19 just two weeks ago. 

I’m also a student journalist for the Daily Californian. I get to write about many disability related issues which have included a column on autism. My two recent articles focused on social distancing and on healthcare issues surrounding the disability community during this pandemic. If you google my name and Daily Cal you should find links to these articles. 

https://www.dailycal.org/2020/04/04/a-chilling-waiting-game-disability-and-health-care-during-a-pandemic/

https://www.dailycal.org/2020/03/27/the-real-social-distancing/

I joined the board of ASAN, the Autistic Self Advocacy Network earlier this year. 

autisticadvocacy.org

As the pandemic unfolded ASAN has really been working with other disability orgs to advocate for our civil rights. An early area was medical rationing, the combined advocacy has lead to non discrimination directives at various levels. But we have to continue to be vigilant that this is translated to in the field. 

ASAN is also branching out now to work on issues like making sure people who need a support person can bring their family member or communication partner with them if they are hospitalized, even if the hospital has a no visitors policy, as a reasonable accommodation under the americans with disabilities act. As a person with high support needs, this is an area close to home for me. 

In terms of home and community based services, ASAN is pushing very hard for the next covid bill to include emergency grants to service providers so that people can be supported in their homes, and to keep people from ending up in congregate settings. To make that possible, support people need personal protective equipment and higher pay, as well as emergency child care and paid leave. Some agencies need to hire more folks and rearrange how they provide services etc. ASAN is also tracking infections, hospitalizations, deaths from covid-19, of people with disabilities living in congregate settings, because we know those settings are so much deadlier than a person's own home. 

Several disability orgs, including ASAN, are partners on the #WeAreEssential social media campaign, which lays out a lot of these issues along with others.

Issues facing Students and Families during this time

Hari, we know covid19 has had a great impact on students and families. Can you tell us about student responses or your thoughts on this?

I’ve been informally polling other peer autistics and their families to find out their challenges. And, as an autistic with high support needs, I experience many of these issues myself as well. 

To start with, this pandemic is kind of like a waiting game filled with endless uncertainty and anxiety. If the abled bodied population themselves are having increasing mental health issues, it’s a multiplier effect on the disabled population. I’m hearing that even kids under 10 are getting prescribed antidepressants. 

In autistics this uncertainty and anxiety can also manifest in so many different ways. There has been a huge increase in all kinds of maladaptive behaviors, whether it's meltdowns, obsessive compulsive behaviors, aggression, self-injurious behavior, disturbances in sleep patterns and other things that add to the already stressful times. 

It's the disruption or even lack of access to support services, therapies and education itself. The remote education model or tele therapy does not work for many who need that physical one on one support and have other needs. I want to quote one parent who says that “only certain people with certain needs qualify for tele therapy.”  Students  who are transitioning between the school and adult programs, like one of my friends, are stuck in limbo with no help at all.  

Many autistics had been working on building independence in community based skills or social interaction skills. Many don’t have the same access to the outdoors or nature hikes as before even for physical exercise. 

Even prior to the pandemic, we as a community have experienced a great deal of social isolation and stigma; this lockdown has given it a frightening face.  Lack of these critical supports, therapies and social opportunities will mean a regression in skills for autistics. 

At the same time, many other skills and behaviors have to be un learned for the current time, such as shaking hands or holding the door open for others. Then there is other hygiene issues - autistics with impulse control issues find it hard to not touch surfaces or maintain a six feet distance. 

Even for those who are able to avail of some form of remote instruction, whether at school or college level, there are big time gaps between the classes, with basically nothing to do. While some have figured out ways to cope, others find this to be very isolating and suffocating. One of my peers says he is “super duper frustrated.”

A bright spot is that some autistics are enjoying remote instruction, where you are free from social interaction pressures. I can just mute my zoom to cut off my stemming noises. Keeping up with social expectations can be exhausting for autistics. 

Wearing a mask has presented another challenge as many autistics have sensory issues. 

Every autistic has a different set of challenges and things that calm or work for them.

 It takes time for families and other caregivers to figure these out. Those with higher support needs rely on caretaker familiar with their needs. During this pandemic the caregiver role defaults to the immediate family for many autistics.  What happens if those caregivers fall ill or if the individuals themselves fall ill. Will healthcare workers even know what to do, how to handle our “behaviors” and other unique needs?. 

Autism is wide spectrum which means that many have health co-morbidities, like seizures and gut conditions. Even during non-pandemic times, many of these go undiagnosed. How will doctors even begin to treat us. 

Many of us will need our support person with us if we need to be isolated or hospitalized. It is a scary thought to imagine being alone in a hospital. I am so happy ASAN, Communication First and other orgs are working on this issue,  That support people be not just be allowed to accompany us, but also be provided the PPE protective gear. 

Some of my peers have needed hospitalization for other issues during this time, which can be absolutely un nerving. 

 I can’t even begin to articulate the plight of autistics who are in group residential settings, especially the larger ones.They like nursing homes for the elderly, are sitting ducks. 

Now for another perspective.  I mentioned earlier that we had discussed autism and covid at the autism class at U C Berkeley for which I am a student instructor. A majority of the class are able-bodied students. What really struck me was the lack of awareness on the part of the non-disabled community. Some of the student responses in my class - from surprise to shock is so telling.  Here are a couple of sample reactions. 

“This entire pandemic is making me absolutely sick about how the disability community is being treated. Dehumanized and devalued. It’s not fair, it doesn’t make any sense”

“The disregard for people with autism, or any intellectual disability, by hospitals in the time of covid 19. It is saddening to see, especially when it is in direct noncompliance with the Americans with Disabilities act.”

“Something that surprised me was how people on the spectrum are being treated throughout covid 19. It actually makes me so upset that people need just as much medical attention as those that are being affected. Just because we are having a pandemic does not mean the normal life things just suddenly stop.”

The point I want to make by showing you these student reactions is that we need to work even more vigorously on awareness of these issues in the mainstream community to bring about change. We need even more allies in the non disabled community. Only then will change be easier and can happen. The current scorched earth scenario is laying bare all the inadequacies of the system. This is like a shocking wake up call of sorts.

What gives me hope

What is giving you hope or resiliency right now?

I am in awe, of the fierce advocacy efforts being done by organizations and individuals to keep our civil rights alive by making noise and lobbying and widely publicizing our issues. We need to make a lot more noise.

This time of need has also given way to so many random acts of generosity and kindness.

An example is the many different online free classes that have sprung up to help us through this hard time. I am able to try out new classes and am no longer limited by having to travel to a remote location amid traffic  to try these things.

Our new normal has meant that many of what we thought had to be social norms are no longer applicable. You don’t have to sit in a cubicle from nine to five to be able to hold down a job for instance. You can turn off the camera or the mic on your zoom if you want. You can choose to be heard and seen. 

I am also encouraged at how greener our earth is getting in just such a short span of time. Just cutting down traffic can have such a huge impact on our air quality. It gives me much hope that we can do something about climate change. And with people in lockdown, the animals are finally getting to enjoy the outdoors in peace which is again telling of their oppression. 

I am in deep admiration that many in the disabled community are not just helping out each other during this time but also participating in the greater community good, like making masks for healthcare workers.

Our strength of character and resilience is shining through. And that gives me so much hope for now, and the future.

A Call to Action

We have enough time for each panelist to make one call to action.

This has been a tremendous wake up call of sorts for all of us.

 I'll keep this call to action very short with ASAN’s big ask right now. 

We really really need people to call, to email, to tweet your congressperson, and demand funding for home and community based services. 

autisticadvocacy.org/2020/03/action-alert-covid19-relief/

Additional Audience Chat Comments

Fantastic insights indeed Hari. Thank you so much for sharing

Thank you Hari - great insights!

Thank you Hari for your positive words of hope.

Great insights Hari. 

Full Video at  https://www.youtube.com/watch?v=mXiI-5WV1RY

Masking as an evolutionary advantage

What is Masking & Camouflaging

Masking and camouflaging are terms used to describe strategies autistics might employ to hide or minimize their autistic traits in social situations. These behaviors can include mimicking NT behaviors, suppressing stimming, or forcing oneself to make eye contact during conversations. 

It is often a coping strategy used by autistics to navigate social situations that can be overwhelming or challenging. It is a means to "fit-in" and also a question of basic safety for some, as the display of atypical behaviors can lead to aversive/negative reactions from others.  

There are subtle distinctions between the two terms.

• Masking refers to the conscious or unconscious effort to hide or suppress autistic traits or behaviors to fit into social situations. This can include copying social behaviors, hiding interests that might be deemed atypical, or suppressing feelings of discomfort in social settings.
• Camouflaging, while similar to masking, can sometimes be seen as a broader concept that includes masking as a subset. Camouflaging may involve more active efforts to construct a persona that is socially acceptable or to "pass" as neurotypical. This could involve learning and implementing specific social strategies, such as scripts for conversation or specific body language cues.

Consequences

• The effort to constantly hide one's true self can be exhausting and damaging to one's sense of identity and self-esteem (ie: more cognitive effort + more mental health issues). Can contribute to autistic burnout. 

Do only certain "type" of autistics engage in masking/camouflaging?

• No. Masking and Camouflaging is engaged in by autistics across the spectrum. 
• People with higher support needs very much try, but just may be "less adept" at pulling off camouflaging due to communication and sensory challenges. Everyone has the desire to be safe from potential negative consequences. For higher support needs autistics, it can come down to basic safety as the display of atypical behaviors can lead to negative reactions and consequences from others. eg: you can get thrown off a plane for displaying stims or you get additional security screenings at airports because you engage in some repetitive stims which cops may perceive as "suspicious."  

More common or effectively practiced by females.

While research shows both male and female autistics engage in masking/camouflaging, there is evidence to suggest that it might be more common or effectively practiced by females. 

Could Camouflaging be a contributing factor in the later dx in female autistics?

This difference has been proposed as one reason for under-dx or late dx in females.  Females might be better at hiding their autistic traits, leading to their struggles being overlooked or attributed to other factors.

In Prof Steve Hinshaw's class, I also learned that 'externalizing behaviors' is often more observable in boys from their first decade itself (eg: acting out, aggression, boisterous) - so they catch the boys early in terms of dx. In girls the externalizing behaviors become more observable in their second decade (eg: eating disorders, NSSI - non suicidal self injurious behaviors etc) - so catching them later. 

Can Camouflaging be an evolutionary advantage for females?

I think the idea that females are better at camouflaging as an evolutionary advantage is an intriguing hypothesis. The argument would be that this ability allows female autistics to better integrate into social groups, potentially providing benefits in terms of social integration. 

However, it's important to note the negative effects on mental health that come with having to continually engage (cognitive effort) in camouflaging.

When Masking/Camouflaging is layered onto Triple-Bind

I first heard of Triple-Bind in Professor Steve Hinshaw's class and immediately thought of how Masking would be layered on top of Triple-Bind

"Triple Bind," poses a multifaceted challenge for women (disabled or non-disabled), requiring them to navigate a complex labyrinth of societal expectations. Hinshaw's framework suggests that women are pressured to excel in traditionally male-dominated arenas, asserting themselves competitively and ambitiously. Concurrently, they are expected to embody the nurturing, demure qualities historically associated with femininity. Adding a third layer, women are also pressured to adhere to stringent standards of attractiveness and sexuality. This triadic set of expectations creates a near-impossible standard for women to live up to, encapsulating the pervasive societal pressures that contribute to stress, anxiety, and a multitude of other psychological burdens.

Autistic females, therefore, must navigate not only the stringent expectations laid out by the Triple Bind but also the added layer of disguising their neurodivergence (camouflaging) to blend into a world that predominantly values neurotypical behaviors.

A Disability Studies Perspective

Exploring the intersection of the Triple Bind and Masking/Camouflaging through the lens of Critical Disability studies and Crip Theory offers profound insights. These academic disciplines critique societal norms that marginalize those with disabilities, advocating for a broader, more inclusive definition of normalcy. They emphasize the value of diversity and challenge the structures that define disability as a deviation from an arbitrary norm. Queer Theory, in particular, enriches this analysis by highlighting how gender and sexuality norms intersect with disability, further complicating the social experiences of autistic women who may also identify as LGBTQ. By examining the experiences of autistic women in the context of these theories, we can uncover the systemic barriers that perpetuate exclusion and advocate for a society that celebrates rather than stigmatizes differences.

Psychological Measures 

The Camouflaging Autistic Traits Questionnaire (CAT-Q) was introduced in 2019 by Laura Hull and colleagues. It aims to quantify the effort and strategies employed by autistic individuals (particularly females or AFAB, assigned female at birth) to camouflage their autistic traits. It measures the discrepancy between the individual's natural autistic behaviors and the behaviors they exhibit in social contexts, essentially capturing the social coping strategies that are not naturally aligned with their intrinsic autistic characteristics.  A self-report  approach allows for the collection of subjective data on camouflaging behaviors, which are inherently internal and personal.

The questionnaire is divided into multiple items that assess various dimensions of camouflaging

• Masking: Efforts to hide autistic characteristics.
• Compensation: Strategies to offset difficulties in social situations (e.g., memorizing social scripts).
• Assimilation: Efforts to fit in with others by copying or mimicking non-autistic behaviors.

Research Citations

• Lai, M.C., Lombardo, M.V., Pasco, G., et al. (2011). A behavioral comparison of male and female adults with high functioning autism spectrum conditions. PLoS ONE, 6(6), e20835. This study provides insights into the behavioral patterns of adults with autism, including aspects that might relate to masking and camouflaging.
• Hull, L., Petrides, K.V., Allison, C., et al. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders, 47(8), 2519–2534. This article explores the concept of social camouflaging in adults with autism and discusses the implications for mental health.
• Dean, M., Harwood, R., & Kasari, C. (2017). The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder. Autism, 21(6), 678–689. This study specifically addresses gender differences in social behaviors, including masking and camouflaging, among children with autism.
• Goodley, D. (2014). Dis/ability studies: Theorising disablism and ableism. Routledge.
• Hinshaw, S. (2009). The triple bind: Saving our teenage girls from today's pressures. Ballantine Books.
  

Related Posts

• Dont Cant Wont - Masking Camouflaging https://uniquelyhari.blogspot.com/2021/05/dcw.html

How Unconscious and Conscious Bias Affect Autistics

In PlainSpeak, Plain Language for the Lay Reader 

In our journey towards a fair and inclusive society, it's important to understand the different types of biases that affect how we think about and treat people, especially those with autism. Bias can be divided into two main types: implicit (unconscious) and explicit (conscious) bias. Both play big roles in keeping unfair treatment and inequality going.

Implicit Bias

Implicit bias, also known as unconscious bias, refers to the automatic and unintentional thoughts or stereotypes we have about certain groups, even if we don't realize it. These biases are deep in our subconscious and can affect our actions and decisions without us knowing. For example, someone might unknowingly associate certain racial groups with negative traits, even if they believe in fairness and equality.

Impact on the Autism Community

For people with autism, implicit biases can show up in different ways:

• Healthcare: Doctors might unknowingly underestimate the pain or discomfort that autistic people feel, leading to poor care or wrong diagnoses. These hidden biases can result in less effective healthcare for autistic individuals (van Ryn & Fu, 2003).

• Education: Teachers might not expect as much from autistic students, which can hurt their chances to learn and succeed. This could mean keeping autistic students in separate special education classes instead of including them in regular classes, or treating them differently in the classroom, affecting the quality of their education.

• Employment: During hiring, employers might overlook autistic candidates, even if they are qualified for the job. This keeps unemployment rates high among autistic adults and limits their ability to be financially independent.

Recognizing and dealing with implicit bias is crucial for promoting diversity, fairness, and inclusion in all parts of society. Tools like the Implicit Association Test (IAT) can help people discover their hidden biases, so they can work on reducing them in their actions and decisions.

Explicit Bias

Explicit bias, on the other hand, is when people deliberately hold prejudiced views or discriminate against specific groups. Unlike implicit bias, explicit bias is clear and recognized by the person who holds these beliefs. For example, someone who openly says negative things about people of a certain ethnicity is showing explicit bias.

Impact on the Autism Community

Explicit bias against autistic individuals can take many forms:

• Hate Speech and Discrimination: Autistic people might face obvious discrimination or bullying at school, work, or in social settings. This can lead to feeling isolated, anxious, and depressed.

• Discriminatory Policies: Explicit biases can shape policies that hurt autistic people. For example, not providing the right support or accommodations in schools or workplaces can limit their opportunities.

• Stigma and Stereotyping: Explicit biases keep harmful stereotypes about autism going, like the idea that autistic individuals can't contribute meaningfully to society. These stereotypes can hurt their self-esteem and mental health, making it harder for them to fit in.

Addressing Bias in Autism

Understanding and addressing both implicit and explicit biases is important to create a fairer and more inclusive society for autistic people. Here are some steps we can take:

• Education and Awareness: Teaching people about autism and the biases that affect autistic individuals can help reduce both types of bias. Campaigns and programs can challenge stereotypes and promote understanding.

• Policy and Advocacy: Supporting policies that help the rights and needs of autistic people is essential. This includes making sure they have access to good healthcare, education, and job opportunities.

• Training and Development: Training professionals in healthcare, education, and other fields to recognize and deal with their biases can lead to fairer treatment and better outcomes for autistic individuals.

• Community Engagement: Involving the autism community and listening to autistic voices in decisions can make sure their needs and perspectives are included. This helps build a society where autistic individuals are valued and respected.

Housing for Adults with Autism in the Bay Area

A Paper for my Introduction to Disability Studies Class 

Housing for Adults with Autism in the Bay Area

Children with autism spectrum disorder (ASD) grow up to be adults with ASD, as autism does not magically go away in adulthood. The prevalence of ASD is rapidly increasing, with the CDC (2019) placing the diagnosis rate at 1:59 children. This means that there are an increasing number of autistics exiting the school system and entering the adult world (Marino, 2018).  However, as I find when trying to navigate the adult world of autism, supports and services are not just inadequate but the existing supports are not prepared to deal with the varied and unique needs of adult autistics. The situation can be complex as there is a huge spectrum of profiles within autism itself, a factor that also comes into play in the case of housing. While many autistics function independently with little to no support, a significant number are not employed and need more support for daily living. This paper focuses on the housing challenges for adult autistics needing more support in the Bay Area. 

Other topics in the adult ASD world that were considered during the web search were Adult Day Programs and employment. The first was concerning as many of my peers have not been accepted into any Adult Day Program due to “autism behaviors.” Adult Day Programs typically support people with disabilities (PWD) after they exit the special education system at age 22 (Escher, 2014) and range in the level of support provided. The second issue of employment is equally concerning as according to the National Longitudinal Transition Study only, “58% of young adults ages 20-25 with ASD who had been in special education in secondary school had ever worked during their early 20’s” (Marino, 2018).

As the process of deinstitutionalization began all over the US, an important piece of legislation in California that directly impacted housing for individuals with developmental disabilities like autism was the Lanterman Act of 1969. It opened the doors to the “right to get the services and supports [autistics] need to live like people without disabilities” (The Lanterman Developmental Disabilities Services Act, n.d.). It allowed for the creation of Regional Centers which are nonprofits that contract with the Department of Developmental Services (California Department of Developmental Services, 2018). Social workers at the Regional Centers help coordinate tailored services and supports including full or partial funding depending on the type of housing.  Yet the housing situation in the Bay Area as summed up by Lisa Kleinbub, executive director of the Regional Center of the East Bay, is that there is, “a pent-up demand right now among young (special-needs) adults for housing...They’re housed in settings that really aren’t what they want.” (Kendell, 2019). Kleinbub goes on to add that there are fewer than 100 units for the 4500 units of housing needed in Alameda and Contra Costa counties. When it comes to Santa Clara, Santa Cruz, Monterey, and San Benito counties, Kleinbub states that almost eighty percent of the 17,500 clients live with their parents  (Kendell, 2019). 

In this research, it is useful to briefly look at some of the current housing options as listed by the San Francisco Autism Society.  The most common and well known are the Group Homes or Community Care Facilities. The typical three-bedroom group home is privately owned and licensed by the state and can house up to six individuals with the state paying the group home for each individual depending on the level of care needed. Group homes provide an all-in-one solution (ASD Housing Options, 2019).

Apartments and co-ops are arrangements where an individual lives alone or with shared living space. Staffing support is provided through agencies or individuals that provide Supported Living Services (SLS) or Independent Living Services (ILS) (ASD Housing Options, 2019). The big advantage of using SLS and ILS is that the client, “retains separate control over housing choice and support staff...[even as they] need support to carry out choices” (ASD Housing Options, 2019). Rents are expected to be funded through social security income received by the individual and Section 8 vouchers which landlords can make use of to rent apartments at fair market value. 

The autism community model is increasingly popular and is loosely based on a retirement community model, offering housing, community and sometimes programming options. Two of my peers will have a future home in the Clearwater Ranch in Sonoma county. Spread over 80 acres it will feature many single-family homes, each housing four ASD adults (with their own room) and two caretakers. Another example is the Sweetwater Community in Sonoma County and the soon to be completed Summer Hill project in Pleasanton (Kendell, 2019). Extra support needed for individuals would still have to be organized via SLS and ILS agencies (ASD Housing Options, 2019). 

However, each type of housing option comes with its own set of challenges and more so in the context of the Bay Area. A small subset of these issues are discussed below. 

The first issue is that “even in situations where PWD are not able to live independently, living in community settings is generally considered preferable to institutionalization (if adequate support is provided)” (Schur, Kruse, & Blanck, 2013, p. 124). Group homes and SLS/ILS housing are more in line with the principle of housing in community settings. So there is debate over whether the creation of exclusive communities for autism would be a form of  “gilded” segregation. But Kleinbub feels that the community model may work as long as, “residents have opportunities to venture beyond the building” (Kendall, 2019). I also want to add that that it is worrying that so many autism communities are coming up in Sonoma county which is likely to be the site of recurrent wildfires as climate change is not likely to reverse course in the immediate future. As we learned in class, PWD are most at risk during rescue and evacuation attempts. 

A fundamental problem is that many of the housing solutions for the disabled community were not envisaged for the behavioral issues that often accompany autism. Housing in the community is easier when there are fewer “disruptive” behaviors. Some autistics may find it difficult to share rooms in Group Homes or have close proximity, others may have frequent meltdowns or behaviors that other autistics may not be able to tolerate. A friend was sent back to his parental home from two different group homes as they could not manage his behaviors. 

Training staff to the unique needs of the individual has been a challenge especially if an individual is seen as having more support needs. My friend Tyler Fihe, now in his 30s, has been living on his own in an apartment with SLS support since age 19. He states in a youtube video he made for the 1:59 Autism Spectrum Disorders DeCal class here at UC Berkeley, “I wish I could say that I have been fully in charge of my household...having trained, probably hundreds of staff over the years. I finally wrote an operations manual. It is hard work to keep it up to date, but it is harder to teach the same basics over and over again” (Fihe, 2019). 

The Bay Area is very expensive to live in, making it almost impossible to find affordable housing for adult autistics. According to the Bay Area Market Reports, the median home price in the Bay Area is  $980,000 compared to the California average of $609,000 and the United States average $279,600 (Bay Area Real Estate Markets Survey, 2019). Rents are also prohibitive, the national average at $1,465 compared to $3,240 in Berkeley, and $2,789 in San Jose (Bona, 2019). It is not without some irony that the social security income received by an adult, which averages $1000 a month, “is expected to fund the rent, utilities, food and living expenses“ (ASD Housing Options, 2019). 

The high cost of living affects support services as well. In his video, Fihe adds, “Staff turnover has always been a major problem. The pay for staff is ridiculously low. It bugs me that my staff could make more money making lattes and mochas than helping me have a life. Our society values seem pretty screwed up to me" (Fihe, 2019). Two of Fihe’s SLS agencies have shut down in the last ten years due to staff not being able to afford to live in the bay area (Fihe, 2019). This is a continuing trend. Group homes are again paid a flat state fee which does not account for the geographical cost of living (ASD Housing Options, 2019). The group home of another friend is moving to a rural area to lower their cost of operation. When that happens either you live too far away from your family to visit or move back into the family home as you continue to search for other (almost non-existent) options. 

Even in the case of solutions like the communities, either the cost of entry is prohibitive or the affordable ones have long waitlists. A family I know bought into Clearwater Ranch a few years ago for $200,000 and the other family recently at $350,000. It guarantees a room for the lifetime of the ASD adult. 300 individuals have expressed interest in the 31 units of the more affordable Sunflower Hill community project with rents from $300 to $1,500 a month (Kendell, 2019).

One of the concerns for adult autistics and their families is the potential for abuse and neglect in any housing option. The social worker for a severely impacted ASD friend paid a surprise visit to his SLS apartment and found his careworker on top of him. His horrified parents immediately moved him back to the parental home for now. 

Group homes have the most oversight in that they are licensed. However, my social worker remarked that it was impossible to physically visit each client more than once or twice a year as she had a huge caseload, many of them in different group homes. According to the San Francisco Autism Society, some group homes may also choose to limit family involvement and oversight (ASD Housing Options, 2019). Historically, a lack of oversight and accountability contributes to neglect or abuse (UNICEF, 2005, p. 12).

A majority of adults continue to live in the family home for many years due to this housing crisis. There is some advantage to living amongst familiar friends and family which gives a sense of belonging (ASD Housing Options, 2019). While it is actually cost-effective for the state to have the adult continue to stay with their families into adulthood, there is currently a huge financial disincentive to do so (ASD Housing Options, 2019). The full range of ILS and SLS services cannot be accessed unless the adult autistic resides in a separate address. Aging parents simply cannot continue to provide the same level of care without access to significant SLS support, so autistics are often forced into housing options that are less than optimal. Changes in legislation to enable adults to continue living in the parental home with full SLS/ILS support could help alleviate some of this housing crisis until better alternatives can be found. 

Families can indeed play an important role in the oversight process of  “service delivery and monitoring of safety” (ASD Housing Options, 2019).  My social worker had once mentioned that some parents are buying a smaller second home close by for their adult child so that the parents can better monitor service delivery. Buying a second home in the Bay Area is however impossible for most. Some family friends have bought two houses on the same street in cheaper areas like the outskirts of Sacramento, one for themselves and one for their adult ASD family member. A family I know in San Jose is working on converting their “in-law” unit through city permits into a separate address. Caseworkers in Marin County have also indicated to a family I know that the county was now encouraging the building of in-law units on existing properties and zoning them as separate addresses. It is part of the attempt by Marin county to address the housing crisis for adults and the hope is that more counties will follow suit. 

Essentially the state has been unprepared for the exploding numbers of adults with autism which has rushed their housing needs into a crisis mode, more so in an expensive geographical location like the Bay Area. Changing legislation to build and rezone in-law units on existing properties as well as continued residence in the parental home with full SLS support may help alleviate some of this crisis. Thousands of affordable units also need to be built as well as other incentives to make rents affordable. Staffing is a critical component for this population so affordable housing for staff also needs to be addressed. In addition, there is the issue of addressing the unique and behavioral needs of the autistics themselves to consider, which impacts the type of housing they need. The overriding issue of disability rights still remains unresolved for the autism population - that of inclusion via community-integrated housing versus a new form of segregation with the creation of autism communities.  There is clearly a housing crisis for this vulnerable population and currently no simple solutions.

Additional Note: 

Something which appeared almost like a conundrum to me (and Prof Marsha Saxton also hinted at this in class) was the Independent Living Paradigm. PWD (People with Disabilities) went from being dependent on their families to living and making decisions on their own; the shift in decision making towards self-determination is just amazing progress. It truly represents the disability rights mantra of, “Nothing about us, without us.”  In my adult autism housing web paper, one of the options mentioned (or adults with more support needs is supported living, which is a form of independent living. 

The concern is that independent living unless arranged properly can result in isolation. It could end up with just the autistic and a caretaker who will leave for their own family home when their shift ends. The thought of loneliness is one of the most terrifying fears for a lot of folks including me. Just parking a person in the middle of a community with personal assistants does not mean inclusion or a sense of community.  A great irony is that the non-disabled neurotypical population places so much emphasis on being surrounded by family and friends yet the disabled are pushed towards becoming an “independent island” that has to live away from the family. Isn’t having some sort of self-determined, independent living arrangement in your family home or near your family a better option - so you continue to have access to that network of friends and family in your life rather than just a series of paid caretakers alone. Staff turnover is so high in the Bay Area and it is hard for a PWD to get a sense of stability or mental calm when you know 'paid people' around you will/can quit anytime.

We need hybrid housing options that allow for self-determination yet incorporate the opportunity for being included in the community and access to the family and friends network. Doing the paper both educated and worried me as it seemed to me that those of us with more significant disabilities will be at the mercy of caretakers and support agencies.  It was no surprise to me to hear that some PWD got abandoned by their caretakers during the Paradise wildfire 2 years ago.

References for Web Paper. 

ASD Housing Options. (2019). Retrieved October 14, 2019, from https://www.sfautismsociety.org/housing-options-for-adults-with-autism.html. 

Bay Area Real Estate Markets Survey - Compass. (2019, October). Retrieved October 14, 2019,

from https://www.bayareamarketreports.com/trend/bay-area-market-survey. 

Bona, S. (2019, July 22). Bay Area Rent Report - June 2019. Retrieved October 14, 2019, from

https://www.rentcafe.com/blog/california/bay-area-rent-report-june-2019/. 

California Department of Developmental Services. (2018, June 8). Information About Regional

Centers. Retrieved November 11, 2019, from https://dds.ca.gov/RC/.

CDC. (2019, September 3). Data & Statistics on Autism Spectrum Disorder. Retrieved from

https://www.cdc.gov/ncbddd/autism/data.html.

Escher, J. (2014, January 22). Commentary: What happens when autistic children become

adults. Retrieved October 14, 2019, from

https://www.mercurynews.com/2014/01/22/commentary-what-happens-when-autistic-ch

ildren-become-adults/.  

Fihe, T.  [Tyler Fihe]. (2019, April, 9). Tyler Fihe [Video File]. Retrieved from

https://www.youtube.com/watch?v=dTjo1i0B-Oo&feature=youtu.be.

Kendall, M. (2019, May 21). Why the housing crisis hits this Bay Area group especially hard.

Retrieved from

https://www.mercurynews.com/2019/05/20/why-the-housing-crisis-hits-this-bay-area-gr

oup-extra-hard/ 

The Lanterman Developmental Disabilities Services Act. (n.d.). Retrieved November 11, 2019,

from https://lanterman.org/lanterman_act#.Xcnz8JJKjOR. 

Marino, S. A. (2018, September 13). The Special Ed Epidemic: What happens when they age

out of school? Retrieved October 14, 2019, from

https://worldmercuryproject.org/news/the-special-ed-epidemic-what-happens-when-they-age-out-of-school-part-3-of-4/?utm_source=mailchimp. 

Schur, L., Kruse, D., & Blanck, P. D. (2013). People with Disabilities: Sidelined Or 

Mainstreamed? New York: Cambridge University Press.

UNICEF. (2005, July 28). Violence against Disabled Children: UN Secretary Generals Report

on Violence against Children Thematic Group on Violence against Disabled Children

(Summary Report) New York: United Nations. Retrieved November 11, 2019, from

https://www.unicef.org/videoaudio/PDFs/UNICEF_Violence_Against_Disabled_Childr

en_Report_Distributed_Version.pdf

Homeless in Berkeley

Autism and Narrative Invention

https://www.dailycal.org/2019/10/11/professor-julia-miele-rodas-discusses-autism-narrative-invention-in-robinson-crusoe-at-wheeler-hall/

A very interesting talk by Julia Rodas on Oct 4 in Wheeler Hall.

1:68 Autism Decal Class Spring 2019 Semester

Last Day

5/1/19" Last day of the Autism DeCal Class that I teach at UC Berkeley for this semester.

Autism DeCal Class

The Instructors - Hari, Lily, Jordan, Maria

Midterm Presentations

3/13/19:  Listening to Student Presentations for the Midterm Paper in my 1:68 Autism DeCal Class. 
Pretty good!!!

Have already read a bunch of the papers and will upload grades and comments as soon as my midterms are done next Wed!!

Planning a DeCal is a lot of Work

1/30/19 The DeCal team has been meeting and planning our lectures for some time now. I was able to suggest a few topics too.

We have a number of guest speakers lined up for this semester. Lots of emails to sent and dates to be coordinated.

I think this is going to be a most interesting experience for both the students and me.

Teaching a DeCal at UC Berkeley

An amazing opportunity this semester.

I'm going to teach a 1-unit class (called DeCal) at UC Berkeley along with 3 other neurotypical students. The class is 1:68 Autism Spectrum Disorder.

Class roster is full - 25 students. Plus more students on the waitlist!!!

I was so thrilled to see the word "Instructor" on the Cal Central website. I think I will be the first non-speaking autistic instructor at Berkeley.

I feel both humbled and honored.