Paula C. Durbin-Westby Autistic Advocacy Blog: December 2009

December 7, 2009

Combating Autism Act Initiative (CAAI) meeting, December 7-8 2009:

Charting the Course, Tracking Progress

http://www.aucd.org/template/event.cfm?event_id=1769&id=379&parent=379

Speaker bios:

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/speaker_bios.pdf

PowerPoint presentations:

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/plenaries_all.pdf

(My slides are from pages 34-35, and are the set I sent in *before* I made final alterations, which cut out a couple of slides and added some links, and cut some comments. But it’s basically the same. If I can figure out how to post the “real” slides here I will do so.)

When I give presentations, I read the entire thing, except for maybe a few words or phrases. Words in CAPS or italics are cues for me to emphasize a point. I left some of them in here for the same reason.
--

TEXT OF PRESENTATION:

[Slide 1:]

CAAI Annual Meeting:
Opportunities for Systems Change

[Slide 2:]

A bit about me:

I'm a member and on the Board of Directors of the Autistic Self Advocacy Network. I am a mom []. I am an organist and choir director. I am also an indexer of scholarly monographs. If you’re writing a book, I’ll give you both my business cards. ;)

For the next three slides I am going to talk about the Autistic Self Advocacy Network and some of the projects we are involved with.

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism advocacy. Drawing on work done by the cross-disability community on such issues such as inclusive education, and community living supports, the Autistic Self Advocacy Network seeks to organize the community of Autistic adults and youth to add our concerns to the national conversation about us. In addition, the Autistic Self Advocacy Network seeks to advance the idea of neurological diversity as a legitimate range of human neurological variation. Autism is a disability, but we put forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. We work in fields such as public policy, media representation, research and systems change. By autism spectrum I mean the entire spectrum, not just. ASAN’s work often finds us advocating for people with significant disabilities, not just limited to autism.

[Slide 3:]

AASPIRE is the Academic Autistic Spectrum Partnership in Research and Education. The Autistic Self Advocacy Network is the community-based partner for AASPIRE. Currently AASPIRE is conducting the AASPIRE Gateway Project, which is a collaboration between Oregon Health & Science University, University of Wisconsin-Madison, Portland State University, and the Autistic Self-Advocacy Network. This project aims to serve as a gateway to research that is committed to the following values:

• Inclusion: Studies have been developed in collaboration or consultation with individuals on the autistic spectrum.
• Respect: Strengths-based and respectful perspectives and language are used in all phases of research including reporting.
• Accessibility: Every attempt is made to create research participation materials that are physically and culturally accessible to all participants.
• Relevance: Research questions are relevant and useful to the autistic adult community.

www.aaspire.org

http://aaspireproject.org/projects/gateway.html

[Slide 4:]

The Partnering with People with Developmental Disabilities to Address Violence project is a CBPR collaboration between the Rural Institute in Montana, the Regional Resource Institute in Portland, Self Advocates Becoming Empowered (Montana and Oregon chapters), and the Autistic Self Advocacy Network (Portland chapter). ASAN was solicited for participation in order to facilitate involvement by the Autistic community in the project. The purpose of the project is to investigate interpersonal violence perpetrated against people with intellectual and developmental disabilities. This is a 3 year project funded by the Centers for Disease Control and Prevention. Information can be found on the AUCD website listed on the screen:

http://www.aucd.org/template/page.cfm?id=426

[Slide 5:]

Language use and systems change: This quote is from the Combating Autism Act Initiative site: “The purpose of the legislation is to amend the Public Health Service Act to combat autism through increased screening, intervention and education.”

Many autistic adults do not like the combat metaphor. We don’t believe there is some sort of "autism in essence" that can be separated from the individual person. After all, it is PEOPLE, and of concern, young CHILDREN, that are being talked about using warlike metaphors. What autism actually is, is a neurobiological disability and difference, affecting each person in a unique way even though there are commonalities in some of the core conditions, behaviors, and ways of perceiving the world. Although the legislation has that title, no one is required to REPEAT that usage in their own documents.

Parents are also turned off by "devastation" and similar language. I had one parent come into my house and literally THROW the information packet she got from the reputable clinic who diagnosed her daughter. The first sentence in the packet was "Parents are DEVASTATED when they learn of an autism diagnosis." She told me the rest of the information was of no use to her. These metaphors are not limited to one end of the spectrum; I have heard them being used about anyone and everyone on the autism spectrum [I could see a number of people nodding assent, through my blurry reading glasses.]

And one other, and this is from the Virginia Dept of Education: A flyer was available during "autism awareness month" that had the usual "Autism is more prevalent than pediatric cancer, Aids, and diabetes combined." and had NO actual information about autism, not even the 3 core conditions! My 7-year old son, who is not autistic, but who has me as a mom, knows more about autism than was conveyed in that flyer. Parents, and children on the spectrum, deserve better and more accurate information than that! In general, a more neutral terminology will foster better outcomes for autistic people by re-focusing priorities toward endeavors that are practical and useful throughout the lifespan, in areas of education, services, societal acceptance, and others.

[Slide 6:]

I was recently invited to be a panelist at the Interagency Autism Coordinating Committee's Scientific Workshop for updating the Strategic Plan for 2010. I was on the panel that focused on diagnosis and assessment.

The aspirational goal for the diagnosis/assessment section in the 2009 Plan read: " Children with or at risk for ASD will be identified by 24 months and receive appropriate interventions."

The panel, after much discussion, suggested a new aspirational goal: "Children at risk for ASD will be identified through reliable methods during the preclinical stage before ASD behavioral characteristics are present and people who have ASD will be detected at the point when ASD characteristics are observable, across the lifespan. "

This introduces the idea of diagnosis of older children, teens, and adults, limits the use of methods to *reliable* ones, and encourages a lifespan approach. This version, which may or may not be accepted by the IACC members, also leaves out the "intervention" piece, which will be addressed by other sections of the plan.

Early Identification is the "Learn the Signs" part of "Learn the Signs, Act Early." Diagnosis can be done reliably at certain ages; it is less clear whether some of the very early diagnoses are accurate or reliable, according to discussions I have been in with researchers, agency officials, and others.

When doing assessments, strengths as well as difficulties must be noted. Some of this assessment work, especially research on assessment methods, should be done in consultation with autistic adults.

[Slide 7:]

• What does “Act Early” mean?
• Assess strengths and difficulties
• Teach to strengths
• Address difficulties in a manner that is positive and respectful
• No stereotypes about what a person can or can’t achieve.

The whole concept of "intervention" is problematic because it suggests, by definition, that the autistic pattern of development is undesirable and that it must be altered and redirected into something else.

Acting early ought to mean determining, in a respectful and unbiased way, how a young child perceives the world and how the child learns best, and then designing an individualized program accordingly. And, as one adult on the spectrum pointed out to me, “that ought to be done for all children, not just the autistic ones”.

[Slide 8:]

• What does “Act early” NOT mean?
• “Let’s try something, anything!”
• NEED INPUT FROM AUTISTIC ADULTS
• Find out from us what works, what does not

Time is short so I am going to give only three examples:

Speech and language therapy, Occupational therapy and others: Use positive methods. Do not take away keyboards in order to force someone to talk. I know adults who refuse to talk due to fear that their PRIMARY means of communication, their keyboard, will be taken from them.

Restraints and seclusion are a big topic these days, what with the General Accounting Office report of last spring and subsequent legislation being introduced in Congress. Several studies done in the wake of the GAO report that were discussed in legislative hearings that I attended discovered that the primary reason that most restraints and seclusion are being done is for purposes of discipline or punishment. That is not what they are for, and is not acceptable. If you are in a field where there is a chance that restraints and seclusion are being used inappropriately you can advocate for an end to these practices. The Autistic Self Advocacy Network is a member of APRAIS, the Alliance to Prevent Restraints, Aversive Interventions and Seclusion, which advocates against the use of these techniques and condones the use of restraints ONLY in cases where there is a clear and direct threat to self or others.

[Slide 9 (picture of my dog looking up adoringly at me):]

This is my dog….[Note: people always like this slide; I got some laughs when they saw it. He’s my eye-contact research ambassador….] Eye contact often gets thrown into the "social skills" area, but it might need to be in the "communication" area since many of us either look at mouths in order to "lip-read" due to auditory processing difficulties, or, if we are visual thinkers, which not ALL of us are, we are quite literally "looking at what we are thinking." I can either look at your eyes or understand what you just said. Some people are also just uncomfortable with eye contact, or do not get much nonverbal information from it, so are not drawn to eyes. Recent comments on eye contact research include “Now we can retrain toddlers to look away from mouths and at eyes,” and this is an example of where the experience and knowledge of autistic adults can be invaluable and prevent something like children being less able to communicate because they are not being allowed to look at mouths to help them process spoken language.

[Slide 10:]

Adults on the autism spectrum, particularly young adults I talk with, who are more likely to have been identified at an early age, have very strong feelings about being "trained" to behave in ways that are not natural for them. People have talked about the high stress level that comes with that much pressure on them to "appear" or even to BE, "normal" or non-autistic. Often it's outwardly noticeable traits like hand-flapping, that are targeted. I have talked with or observed parents who were trying to train their child out of that happy kind of hand flapping that means real happiness. I did an experiment with one mom who told me that she was teaching her son not to flap. We determined that he flapped when he was excited or happy. I asked her if she smiled or laughed when excited or happy. Laughing and smiling, she said "Yes! That's what I do!" I said “The next time you are happy, DON’T SMILE! DON’T LAUGH! and to hire someone to assist her with this to make sure she didn't do it.

IF A BEHAVIOR DOES NOT HARM THE PERSON OR OTHERS OR DAMAGE PROPERTY, AND IS MERELY SOCIALLY STIGMATIZING, then that behavior is neutral. We need to educate people about autistic differences so that they will be less stigmatized. Professionals can ADVOCATE FOR acceptance of autistic differences.

[Slide 11:]

Note: This slide and discussion is not meant to disparage recovery research but to introduce a note of caution which we feel is important. The point is to engage thought and introduce what might be new and/or difficult ideas into the conversations and decision-making about autism.

• Recovery research:
• Co-occurring conditions still present
• Inhibition of “core features” vs. “losing” core features?
• Learning skills and developing, rather than “recovery.”

“Recovery” is a language choice in some ways, but an important one, given the climate of "I'll try anything to cure my autistic child!" “Recovery,” at least at this stage in research, is more of a metaphor than a fact. There is no evidence that they have recovered from AUTISM, especially given the admission that many, or most, of them, still have co-occuring conditions that are common to people on the autism spectrum. What may be occuring is that the person is learning skills, which does happen with people on the autism spectrum. We aren’t not developing, we just do it at a different pace and in different ways.

[Slide 12:]

Some key stakeholders in systems change efforts. None of these stakeholders can be left out if the most beneficial and sustainable systems change is desired.

Adults on the Autism Spectrum:

• Respectful language and concepts

• Respectful educational and other initiatives that are appropriately tailored to the individual

• Move away from institutionalization, including not just physical institutions but a sort of “institutional mindset” that people on the spectrum often encounter

• Person-centered planning and self-determination

[Slide 13:]

Quality of Life issues. All of these are crucial in the life of any person:

• Domains measured by World Health Organization Quality of Life Instrument:

• Social relationships and social support
• Physical health
• Mental health/psychological health
• Independence: mobility, activities of daily living, communication and work capacity
• Transportation access
• Vocation
• Recreation and leisure

[Slide 14:]

Children on the spectrum:

• Have the same right to self-actualization and life choices as non-disabled children
• Individualized programs that are more “supports” than “interventions.”
• Professionals: consult with autistic adults on both general principles and individual cases

[Slide 15:]

Stakeholders: Non-Autistic Parents

• Easily accessible non-biased information about autism.
• Website portal for information access
• Autistic adults involved in development of materials for parents (both for non-autistic and autistic parents)
• Service delivery infrastructure transparent. Parents should not have to wait years to find out details about Medicaid waivers, EDCD, etc.

Parents need to have access to a website or other portal, PREFERABLY ONE-STOP, with accurate, non-biased information. Parents of newly diagnosed children, whether those parents are on the autism spectrum or not, may need both practical and emotional support.

[Slide 16:]

Stakeholders: Parents on the Spectrum

• Parents on the autism spectrum, while not easily categorized:
• Are more tolerant of children’s differences
• Are an invaluable source of information and expertise on autism
• Are less tolerant of coercive “treatments”
• May need help navigating service systems
• May be subject to stereotypes about their parenting: Don’t assume poor parenting

[Slide 17:]

I took out the slide on professionals in the interests of time, but I do want to focus on one segment of the professional population and that is practitioners, researchers, etc. who are on the autism spectrum. These are, and could be, some of the “health care professionals from underrepresented populations” that are frequently referenced in the “Draft Evaluation Design Plans.”

They could be:

• SLPs
• DBPs
• OTs
• Special education teachers

They will interact with, or sometimes be officials, program directors, employees in AUCD-related programs. I know people in all these fields except DBPs, although I know some physicians on the spectrum. I won’t ask for a show of hands from the audience… if you are on the spectrum…. ;)

As part of my preparation for this presentation I sent out an informal set of questions to people on several of my listservs. I asked whether or not they were “out as autistic” at work, and what the impact of that was. I received quite a number of responses.

One group was NOT open about being autistic because of concerns about discrimination, job loss, not being taken seriously.

Another group, more people in fact, *are* open about being autistic. Of these many find that it’s a mixed blessing: they find it easier to work with children, clients, parents but harder to work with colleagues. Some say they have experienced discrimination.

One person, who is a counselor, strongly suggests that only autistics who are trained in a discipline really have the expertise to counsel or work with others in a professional fashion. When talking to non-professionals, you can and should talk to many adults on the spectrum, not just one or two, when learning about what we think about autism and what our experiences are.

People on the spectrum who work in these fields need to be encouraged and supported, with reasonable accommodations. Some of the responses I got were very exciting, about how colleagues seek them out for advice and expertise that they themselves lack. I strongly urge recruitment of individuals on the autism spectrum for health services professions.

[Slide 18:]

Delivery systems: I looked at a lot of sites linked to AUCD, and am picking out one or two just because I got interested in them, and have not had a chance to read everything yet.

The Ohio Autism Internet Modules should be available widely, to parents, professionals, people on the spectrum. I linked to them on Facebook.

Many states have exceptional programs such as this, but they are not linked to resources in other states.

Many gaps right now are being filled, if at all, by entrepreneurial parents and people on the autism spectrum who are starting their own programs at their own expense.

[Slide 19:]

To sum up, some ideas for Systems Change:

• Inclusion of autistic people in meaningful ways
• Culturally competent approach
• What is the “culture”? Autistic individuals, families, communities, carers, shared interests or patterns of characteristics/behaviors:
• Autreat example, ASAN example. [I asked if anyone in the room had heard of Autreat and no one indicated that they had so I gave a brief description.]

Including Autistic adults as colleagues, consultants, and collaborators in areas where we have been either denied access or simply not thought of, will go a long way toward building one type of systems change- the type that not only interfaces with a community of people with disabilities but engages us so that there is an interpenetration throughout that system giving rise to changes that can positively impact on all areas/aspects of the system. Any meaningful systems change initiative will reach its full potential only when people on the autism spectrum are included as full participants in all aspects of the process.

“Questions, comments?”

[Slide 20 is ASAN logo]

--
NOTE:

December 14, 2009. All new material here, this was not a part of the presentation but is an analysis I did afterwards.

I looked at references to “underrepresented populations” in the four Draft Evaluation documents and noticed the following:

References to recruiting and training practitioners from “underrepresented groups” (which could include practitioners on the autism spectrum) are found in the DBP and LEND documents:

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/eval_plan_dbp_2009_1020.pdf (See pages 22, 24, 33, 44)

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/eval_plan_lend_2009_1020.pdf (See pages 15, 22, 30-31, 43)

Interestingly, no mention is made of trainees in the state implementation Draft Evaluation document, and none is made in the Autism Intervention Research Program document:

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/eval_plan_research_2009_1020.pdf

http://www.aucd.org/docs/lend/itac/2009_caa_meeting/eval_plan_state_2009_1020.pdf

An analysis of the four Draft Evaluation Design Plan documents gives the impression that while practitioners and LEND trainees might be drawn from “underrepresented groups,” which might include autistic (and other, such as racial, ethnic, and cultural minorities) trainees and practitioners, no one thought about recruiting and training researchers or state implementation grant staff from these groups. I wonder if the assumption is that these underrepresented groups could not possibly be researchers or grant staff, or that the effort required to expend to recruit into these kinds of programs would not be cost- or otherwise effective? I am not sure, but perhaps the next phase of these documents could include initiatives to reach out to underrepresented populations, including those on the autism spectrum.

Thursday, December 17, 2009

Ari Ne'eman Appointed to National Council on Disability

Monday, December 14, 2009

Combating Autism Act Initiative (CAAI) meeting

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