Sunday, March 16, 2014

Advocating for TPGA Principles at the UCSF Developmental Disabilities Conference

One week ago, TPGA editors Shannon Des Roches Rosa, Jennifer Byde Myers, Emily Willingham, and Carol Greenburg spoke as a group at the University of San Francisco's Developmental Disabilities Conference. It was an honor and a privilege to talk with a group of (mostly) professionals about how we use the power of social media to support our principles and TPGA's mission, including autism acceptance and civil rights for people with disabilities, evidence-based approaches to autism supports and research, and debunking autism myths and misinformation.

TPGA editrixes, post-UCSF session
Shannon, who opened the discussion, is TPGA's senior editor, and the parent of an autistic child.

Thinking Person’s Guide to Autism (TPGA) is a book, a blog, and a community. We aim to support autistic people and their families, counter negative media messages and autism stigma, and provide positive autism attitude role models. We created TPGA in 2010 to be the resource we wish we'd had when autism became part of our lives -- our children's, our loved ones', our friends', our own. TPGA includes perspectives from parents, autistic people, and professionals, with the goal of collaborative information sharing.

We are careful about the autism information we share; it is curated, and evidence-based. We rely heavily on autistic people themselves, as well as professionals and research, to provide good information. So if we don’t know answers, we find them, and we use the best sources possible.

We also provide guidelines to help our community members think critically about autism information, because so much of it, especially on the Internet, is really not reliable. We want to help people evaluate autism information, so they can identify and avoid untested theories and pseudoscience.

We try to provide positive role modeling, as parents, as professionals, and as autistic people (some but not all TPGA editors are all three). We respect autistic voices, and we especially want our community members to see the humanity in all autistic people, and focus on improving autistic people's quality of life, rather than searching for cures or focusing on causation -- we need to support the autistic kids and adults who are already here.

All four of us are parents of autistic children, so one thing we focus on is trying to help other parents have a more positive start, because current media campaigns and messages about autism and autistic people are just horrible. We want to help parents avoid that hurtful attitude that autism is the worst thing that can happen to a child, that their life is over. This is why it's so helpful to have a huge community that understands autism and is experienced, that rejects that idea of autism as some sort of "life sentence" and which provides practical supports and helpful resources instead. Because autism is just one variation of human experience.

We do social media outreach on Facebook and Twitter: Again, we try to focus a lot on respecting and listening to autistic voices, because they provide invaluable insights for everyone in the autism communities: other autistic people, professionals, and parents. So we retweet and share autistic people's stories a lot, to further autism acceptance and understanding. We also do our best to debunk autism myths, such as the assumption that autistic people who can speak or type fluently "aren't really autistic" or don't require support in other areas. Social media lets us engage with the community and share these these ideas directly, lets us give people resources and have conversations.

When parents first become part of the autism community, especially if they have no experience with autism or autistic people, they often feel extremely emotionally vulnerable -- mostly due to social stigma and misinformation. Professionals are often the front line, the first person to provide resources and answer that parent's questions. So, professionals, please try to avoid adding to the parents' fear and sense of being overwhelmed. We're here to provide positive yet practical resources, and you can pass those on. And please do not recommend miracle cures, because that is both hurtful to autistic people, plus autism is not a disease.

It's important to let parents new to autism understand that autistic people can have a very good quality of life and acquire many skills. But if professionals don't share the message about -- or understand -- autistic traits like sensory sensitivities, or the fact that all autistic people continue to develop skills and abilities into and throughout adulthood, even if those don't develop according to a typical developmental schedule, then parents can get stuck on wanting their child to meet typical expectations and milestones. That's not fair to anyone.

We also maintain a safe discussion space through comment policy and moderation. We require and model respectful disagreement. We have a fairly strict comment policy – and we stick to it. We do not allow commenters to use insulting language, or attack other commenters, for instance.

Jennifer is a TPGA editor and Director of the Myers-Rosa Foundation. Her son is autistic and has cerebral palsy.

TPGA is a diverse community of parents, autistic people, and professionals. It's important that we show people autism is life-long, but not a death sentence/burden, which is how it is too often portrayed by the media.

Interaction with autistic adults can change how parents and professionals think about autistic children, can provide incredible insights. If more parents have access to those insights, and insights of parents who accept their children as they are, then we can help families get past any shame or grief. This again, improves quality of life -- for the autistic person/child and their family.

When parent says they want their autistic child “cured,” that is insulting to an autistic adult. Parents need to think about that. This is one more reason we try to use the language of hope, not fear.

TPGA is successful due to:
  1. Constant monitoring of the health of the TPGA community.
  2. Strong communication among editors. (We like each other.) We communicate well, try to show a solid front. We are consistent with our language and dialogue.
  3. Reaching out to other thought leaders in the larger advocacy movement. We are not insulated.
Emily is TPGA's science editor, and the parent of an autistic child. She is a research biologist at UCSF.

We must recognize the importance of not instilling fear into clients or parents. Fear is a really strong motivator, and it's hard to overcome once it's instilled – best to keep it from happening, at ground level (e.g., at initial intake or diagnosis).

She blogs at Forbes, and writes about science and autism. This means she writes a lot about vaccines. In a recent study about anti-vaccine attitudes, parents with negative attitudes about vaccines were exposed to public health messages. If the parents came in with an anti-vaccine stance, after that exposure their stance just got stronger due to exacerbation of their fear. They came in with fear, then bad images reinforced their fear, then they wanted to shut out all perception of danger -- including vaccines. So fear is a big deal, and any work we can do to avoid spreading fear is useful.

“In the absence of fact, the loudest voices get the stage” -- those voices, and fear. Autism pseduoscience and fear mongering hucksters know this, they are savvy, they know how to take advantage of doubts, anxieties, and fears of autism parents. You have a "problem," they can sell you a cure. There is an entire industry of non-evidence-based cures for autism. Avoid them.

We also need to counter the idea that autism is a "monster" that took away a child. This is something we can eradicate, need to eradicate, it dehumanizes autistic people. An example is the Sandy Hook tragedy, which had people mistakenly linking Asperger’s and violence, when the reality is that autistic people are far more likely to be victims of violence. Emily had to speak up nationally on this topic, to counter those fears with facts. Don’t make autism into a monster.

Evidence-based information is important, as is helping people understand what constitutes real science versus pseudoscience, especially so they can evaluate and avoid extreme, non-evidence-based autism treatments such as bleach enemas, chelation, and so on. Our website's mission statement and our book include a checklist of items to determine whether an approach or "treatment" is pseudoscience, if you're faced with that. But if you have parents or patients who have questions about pseudoscience approaches, it's important not to treat them as though they're ignorant or uneducated. Listen to their concerns, but help them understand why an approach might not be reasonable.

Look out for red flags for autism misinformation and pseudoscience. The entire medical industry does not conspire to keep therapies from people; that's not rational. But many autism "therapies" have to do with inventing a problem and then selling the solution, so look at the information provided. Is it anecdotes? Because anybody can make up a testimonial. Is there evidence, papers about it on PubMed and so on? Is the provider promising to cure everything, including uncurable things? And check their credentials. What are they experts in? Because a Ph.D. in chemical engineering does not make a person an expert on autism, for instance.

Carol is a TPGA editor, a professional special education advocate, and an autistic parent of an autistic son.

Carol was diagnosed at 44, so she never received services. She always sensed something was up, that she was different from many people, but she never figured it out; just had many struggles. But her life is Not Tragic. She and her autistic son are not broken or sick, they're just neurologically outnumbered. Her son cannot hold a conversation, and talking is hard, so he talks sparingly.

She is a professional advocate for special education, specifically helping parents find schools that will suit their children. With autistic students, she can evaluate whether a school is autism-friendly; she sees and senses troubling aspects (noise levels, etc.) non-autistic people do not or cannot.

Important to note that anyone can get published today, so anybody can be an authority. We need to be careful, and employ critical thinking. Avoidable mistakes for autism authorities and professionals:
  1. Don’t buy into notion that you have a crystal ball. There is no way to predict the future, so you don't know the answer when someone asks whether their child will be able to speak, for instance.
  2. The Talmud says we have two ears and only one mouth so we can listen twice as much as we speak. So listen more than you speak! Listen to parents, and autistic people.
On autistic people aging: We need a full range of options for everyone, for all needs and abilities. This happens with appropriate services. There is very little talk about aging and autism, and most of it is negative. But many autistic people's abilities keep expanding and improving throughout adulthood. She is doing better at 50 than she was at 40, and did better at 40 than she did at 30. Autistic people often have excellent pattern recognition skills almost from birth. Improvement in pattern recognition is an attribute of aging brain. So for many autistic people, life gets better as they get older.

Jennifer: The transition from childhood to adulthood is on her mind. Her son is non-speaking. He is growing up. He's a typical teenager in many ways. Yet she sees too many people infantilize adults like her son, continue treating them as children -- this is unfair. But it's not clear what to do – we need more people in the autism advocacy movement. Parents and adults need resources. And we need to teach autistic children life skills so that they can transition to adulthood successfully. 

Shannon: Most important takeaway from this talk: presuming competence. This is more than not talking about people (children too) in front of them as though they don’t understand, e.g., while in the doctor's office. Don’t assume some window of opportunity closes, e.g., there's no hope if a child doesn't get early intervention. There are always windows opening. Her son is 13 and they are just starting to evaluate an assisted communication device for him, it's not "too late" for him as evidence continues to arise that communication devices can help people with communication disabilities of all ages, no matter when introduced.

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We'd like to thank Dorit Reiss for attending our session and providing the notes upon which the overview is based [any errors are mine -SR], Laura Shumaker for effecting our invitation to the conference, and everyone at UCSF who made our participation possible.