First-Hand Perspectives on Behavioral
Interventions for Autistic People andPeople with other DevelopmentalDisabilities

Of fice of Developmental Primary Care
Improving outcomes for people with developmental disabilities

Office of Developmental Primary Care
Department of Family and Community Medicine
University of California, San Francisco
500 Parnassus Avenue, MUE318
San Francisco, CA 94143
Tel: 415-476-4641 Fax: 415-476-6051
Email: odpc@ucsf.edu
Web: http://odpc.ucsf.edu/© 2017 The Regents of the University of California

First-Hand Perspectives onBehavioral Interventions for AutisticPeople and People with otherDevelopmental Disabilities

Author: Finn Gardner

This report was commissioned by the Office of Developmental Primary Care,a program of the UCSF Department of Family and Community Medicine, andprepared by the Autistic Self Advocacy Network of Grater Boston withgenerous support of Alta California, Far Northern, Golden Gate, North Bay,
Redwood Coast and San Andreas Regional Centers

Introduction
The Autistic Self Advocacy Network of Greater Boston prepared this report to provide personal
perspectives on behavioral interventions for people with developmental disabilities. Theseinterventions include Applied Behavioral Analysis (ABA), Floortime, and cognitive-behavioral
therapy (CBT). We believe strongly that people with lived experience can provide well-needed
perspective on what works and doesn’t work for them, and that service providers working withpeople with disabilities can benefit from first-hand accounts. As a disability rights organization
rooted in the principles of self-determination, we also believe that autistic people and otherpeople with developmental disabilities deserve culturally competent, trauma-sensitive,
empathetic care.
In order to find people who were interested in sharing their perspectives, we reached out topeople through personal networks, professional networks and social media websites like
Facebook and Twitter.
After reviewing potential participants’ applications, we found ten people on the autism spectrum
or with related disabilities who were ready to talk to us about their experiences. We talked tosome people by phone, in person, and online chat, and we also heard from some participants
through an online questionnaire.
In the interviews and questionnaire responses, participants identified values they considered
important in behavioral treatment: promoting positive outcomes, preventing harm to people withdisabilities, protecting people’s autonomy, advocating for inclusion, being sensitive to people’s
past trauma, and supporting cultural competency.

Promoting Positive Outcomes and Preventing Harm
“The therapeutic goal was presented as learning social behavior - inretrospect, this was learning to mimic NT [neurotypical, or non-autistic]social behavior. It resulted in corrosive damage to self-esteem and deep
shame about who I really am. No effort was made to explain autism tome or to explain the role of sensory overload in issues like meltdowns,
shutdowns, etc.”
Participants preferred treatments to focus on skills that would help them understand their own
disabilities and coping with sensory overload, as opposed to therapies that made people lookless autistic on the surface. Therapies that participants considered helpful included occupational
therapy to help with sensory integration, play therapy, social skills groups for children, jobcoaching, mentoring, and mindfulness to help with anxiety. All the therapies suggested were1aimed at encouraging self-determination and self-care, rather than indistinguishability from theirpeers.
On the other hand, participants thought that therapies designed to make them appear
superficially non-autistic did more harm than good. For example, “stimming,” or repetitive
movements that many autistic people use to calm down or focus, should not be suppressed if
there is no physical harm to others. Thea was particularly critical of “therapists and teachers
who saw just ‘behaviors’ to extinguish without considering the feelings and thoughts that might
be motivating them.”
Rachel described her training as judgmental and punitive; it was focused on changing her
outward mannerisms instead of helping her cope with overload and stress. Alex grew up withteachers who would force him to keep his hands still and stop rocking and pacing. As areplacement stim, he started biting the inside of his cheek at school to the point that it would
start bleeding. He also developed tremors in his hands because he knew that if he flapped hishands, he would be punished and other students would make fun of him. Multiple participantsstated that behavior was communication, and that someone who appeared to be misbehaving
might have underlying sensory or emotional difficulties. For example, someone may be
exhibiting signs of a meltdown because of an overstimulating environment, and punishing themeltdown with restraint, seclusion, or other forms of hostile methods do nothing to address theunderlying stressor and can lead to additional trauma. When somebody appears to be “actingup,” there is probably a reason behind it, and it is important to identify that reason instead of justpunishing the outward behavior.

Protecting Autonomy“It all goes back to consent. The power differential between the patient
and the therapist needs to be taken into consideration. The patientneeds to have a say-so in their treatment plan and if they say no tosomething the therapist needs to try something else.”
Participants placed a high value on consent and respecting the autonomy of autistic people andother people with disabilities. Some of them, like Barbara and Rachel, had undergone
treatments in childhood in which they were taught to be compliant without question or were
physically restrained in order to “correct” them. These treatments ultimately made it moredifficult for them to say “no” as adults, even when that “no” would protect them in a potentially
dangerous situation. Barbara said that coercive treatments “teach you to anticipate that when
you say ‘no,’ they’ll bulldoze through that because you don’t own your own body.” Alex addedthat consent for therapies should be mandatory in order to prevent coercion and avoid inducing
trauma. Matthew’s views were similar to Alex; he said, “our culture doesn’t respect children.
Children don’t have their own agency and we’re going to consent for them.”2Though respecting autonomy may seem clearer for adults, the same principles can also beapplied to children and adolescents. For example, a child or teenager can be offered a series ofchoices chosen by the parent for them to decide from to help model informed decision-making.
Parents and professionals should teach young people life skills that are meaningful and useful,and should guide them before they can make decisions.

Being Inclusive“I think the most important part is to value all types of brains. In school,that could mean explaining things in different ways, allowing more
movement, and explaining and accepting things like stimming rather
than discouraging it.”

Participants thought it was important to try to include autistic people within the rest of society.
They had a number of ideas they thought would be helpful: self-advocacy skills, increasing
accessibility, and fostering social inclusion.

Self-advocacy skills. It is important to teach self-advocacy skills to young people withdevelopmental disabilities from an early age. Examples of self-advocacy skills mean learning
how to say “no,” setting appropriate interpersonal boundaries, and stating personal preferences.
Saying “no” in situations where someone may be put into danger by saying “yes” is a valuableand potentially life-saving skill, and training people to say “yes” to everyone perceived as anauthority will ultimately prove risky. Understanding others’ boundaries and creating one’s own
will help people navigate complex social situations and help prevent them from being assaulted
or from committing assault. Learning how to state personal preferences will be useful indetermining the course of one’s life.

Accessibility. Accessibility tools, like text-to-speech applications for people who struggle withoral speech or easy-to-read documents about medical conditions, can help people make theirown informed decisions. Creating accessible environments for people with sensory sensitivities
can help foster inclusion. For example, some people are sensitive to fluorescent lights, roughclothing textures, artificial scents, loud noises, or cigarette smoke. Other people may benefit
from having space to decompress before after overwhelming days at school or work.

Social inclusion. There are a number of ways that autistic people and other people with
developmental disabilities can be part of their community: they can join integrated playgroups as
young children, they can be included in mainstream classrooms, and they can work integrated
jobs with non-disabled people. It is important not to segregate people with disabilities from therest of the community. It is also important to remember that treatments that help autistic people3adhere to social norms, like maintaining good eye contact in a job interview, should be placed
within an understandable context. Contextualizing training will help people understand social
norms, instead of just viewing them as arbitrary niceties. “Because I said so” isn’t an explanationthat gives context. “Because people will feel bad if you don’t do this” can give context.

Being Trauma-Sensitive“When you have everybody there saying they have flashbacks […] andPTSD from being forced into situations beyond what they can handle, I
think that’s a concern and they need to hear it. They’re not listening to us
and not getting all the input.”

People with disabilities can encounter many traumas throughout their lifespan. Living in a worldthat feels hostile or frustrating can cause psychological responses that are difficult to contend
with. People with developmental disabilities are also more likely to be emotionally, sexually, orphysically abused. These realities caused participants to feel strongly about trauma-sensitivity
when working with autistic people and other people with developmental disabilities. Jennifer
noted that “not retraumatizing would be a key thing,” especially since autistic people can be
more sensitive to their environments than neurotypical people might be. “Nobody is walking inwithout baggage without already having been, from the womb practically, put into a world that’s
not made for them,” she continued. Sarah added, “Correction feels like censure and criticism.
Trust is challenging both to autistics and people who have experienced trauma, so the approachneeds to be gentle and accepting. I do not support any interventions such as physical restraint
for stimming.”
When people navigate through a world that is not designed to accommodate their needs, there
is a high chance that they will experience stress from that environment. Any intervention
intended to help people adapt to their environment must be conscious of that stress. Barbara
was especially emphatic, saying that disability professionals should take into account the voicesof adults on the autism spectrum who describe growing up with trauma: “When you haveeverybody there saying they have flashbacks […] and PTSD from being forced into situations
beyond what they can handle, I think that’s a concern and they need to hear it.”Alex reiterated the importance of consent in trauma-sensitive therapies, stating that “[it] all goesback to consent. The power differential needs to be taken into consideration. The patient needs
to have a say-so in their treatment plan.” Matthew had a similar view to Alex; he stressed his
preference for an advisory role for therapists, in contrast to methods that treat them as authority
figures. Even for children and adolescents, placing the emphasis on guidance rather thanpunishment and restraint will prove beneficial.

4Promoting Cultural Competency“There is so much loaded in our generic cultural image of what an autistic
person is to begin with, or what a disabled person is, but the image in
people’s mind is a white male, fairly affluent, at least middle-class.”“It’s so easy for these people to be missed in diagnosis.”
Autistic people and other people with developmental disabilities are not a monolithic community.
They can come from all racial, ethnic, socioeconomic, and cultural backgrounds, though middle, upper-middle, and upper-class white men and boys are more likely to receive diagnoses than
are women, racial and ethnic minorities, or low-income people because of differential access tohealthcare and comprehensive disability services. Jennifer weighed in: “It’s so much easier for
those people to be missed in diagnosis and have behavioral issues attributed to a moral view
rather than a view of disability.” For example, a black child who is having a meltdown in classmight be considered a “bad kid,” while a white child would be more likely to receive services thatreflect their needs. She stressed the need for disability professionals to identify youth fromdisadvantaged backgrounds early on in order to provide them with the best services available tocombat inequity in service provision. Barbara agreed: “Get out of your minds that autism is aneight-year-old non-verbal white boy.” Barbara saw this failure of popular representation firsthand: she was previously homeless and had noticed multiple people with developmental
disabilities of several races and ethnicities who were also experiencing housing insecurity.
Systemic discrimination that allows some people with disabilities to have comprehensive
supports while others fell through the cracks contributes to a number of social ills, including
homelessness, chronic illness, depression, and self-medication through substance abuse.
Ensuring cultural competency when working with vulnerable populations is one way to mitigate
the effects of entrenched social inequality.

Concluding Remarks
Through protecting autonomy, promoting cultural competency, being sensitive to patients’trauma, and fostering social inclusion, professionals can help work toward treatment andtraining plans that affirm the right of autistic people and other people with developmental
disabilities to learn, work, and thrive within their community.

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