Friday, March 28, 2014

Keep Calm and Think Critically: The CDC's 1 in 68 Autism Numbers

Shannon Des Roches Rosa 
www.thinkingautismguide.com


Yesterday the U.S. Centers for Disease Control and Prevention (CDC) held a media briefing to announce and discuss readjusted estimates for autism prevalence: 1 in 68 children. But what does that estimate actually mean? Well, that takes some critical analysis, digging, and sifting, which we'll walk you through, starting with the CDC's Dr. Colleen Boyle's opening statement:
"CDC estimates that one in 68 children has been identified with autism. This estimate is based on information collected from health and special education records of children who are eight years old and living in 11 communities in Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, north Carolina, Utah, and Wisconsin in 2010. These data are from CDC-sponsored autism and developmental disabilities monitoring network. The new estimate exceeds previous overall estimates, roughly it’s 30 percent higher than our last estimate of one in 88 children. To better understand the why, there's an urgent need to do more research. There's also an urgent need to put these findings to work for children and families. More is understood about autism than ever before, but these numbers are an important reminder of the need for answers and to use CDC's data to help children now."
Unfortunately, many news outlets seemed to stop there, which is why you've probably seen sensationalistic headlines such as "Why Did Autism Surge 30%?" and "CDC Confirms Dramatic Increase in Autism Rates." These proclamations completely ignore the CDC's Dr. Marshalyn Yeargin-Allsopp's comments, later in the briefing, that essentially autistic people have always been here -- the CDC is just getting better at identifying them; plus the CDC's understanding of just who qualifies as autistic has changed over time:
"I would just like to add that we recognize now that autism is a spectrum, so I think in the past we thought of children as being severely affected, meaning children with intellectual disability, children who were nonverbal, children with a host of co-occurring conditions, that was the picture of autism, I think, about ten years ago. Our understanding has evolved to the point that we understand now that there are children with higher IQs and children who perhaps are even not receiving special education services. So our understanding of autism has changed over time, and I think that our numbers may be reflective of some of that, as well." 
The 1 in 68 estimate is not surprising. The criteria for autism diagnoses have not just changed over time but changed to be more inclusive over time (Asperger's, added to the DSM in 1994, was folded into Autism Spectrum Disorders in 2013). Anthropologist Roy Richard Grinker studied autism rates in Korea in 2011, and concluded that a more realistic autism prevalence was 1 in 38. This means that the CDC's 2012 estimate of 1 in 88 was already a lowball. As are the new numbers, most likely.

But, again, what do the numbers mean? Ideally, better identification and better estimation of numbers means better identification and estimation of needs and supports. The CDC was also clear that they had identified disparities in exactly who gets identified, who gets overlooked, and why. From KQED's California Report/State of Health writer Rachel Dornhelm:
"...the prevalence seems to vary in different communities and among children of different races. The CDC found white children are far more likely to be identified with autism, even though scientists don’t believe the rates are truly different between whites, Hispanics or blacks. That means that the discrepancy lies in the diagnosis and services available in different communities."
TPGA science editor Emily Willingham elaborated on the racial and cultural factors affecting diagnoses, while reemphasizing the CDC's awareness of under diagnosis, at About.com Pediatrics:
"From the data, it looks like a lot of sociocultural factors enter into the values. Given the huge variability from site to site and the ethnic differences, recognition and service availability are probably factors. Dr. Boyle referred repeatedly to the evolution of our understanding of autism and used the large percentage of children included in these values who have average to above-average intelligence as an example of that. Unlike numbers from a decade ago, these values include children who previously might not have been recognized as autistic." 
The under diagnosis is not just limited to racial and geographic factors. Julia Bascom of The Autistic Self-Advocacy Network (ASAN) noted the problematics of the CDC's not including autistic people over age 21:
"The lack of any data on adults represents a serious gap in CDC's efforts. When the United Kingdom conducted an adult prevalence study, it found the same rate of autism in adults as children, helping to debunk public hysteria over a so-called 'autism epidemic'."
In the same statement, ASAN's Ari Ne'eman confirmed that the increased prevalence rate should reinforce evidence-based expectations rather than cause alarm. ASAN also asserted that "considerable efforts are still needed to make diagnosis and services available to all."

To summarize, primary takeaways from the CDC report are:
  1. The CDC is getting better at identifying the autistic people who have always been here
  2. Better estimates of autism prevalence will ideally lead to better supports and services
  3. There is still much work to do, especially in under served communities and ethnic groups
The simplicity of these takeaways was lost on many, especially "autism epidemic"-focused organizations, many of whom have been quoted in subsequent articles as legitimate autism resources. Which really needs to stop happening.

 But while it is distressing to read articles incorporating opinions from groups whose mission is to eradicate rather than support autistic people like my son, I realize that not all readers or reporters know how to evaluate autism resources for trustworthiness. So, with the CDC's report in mind and April's Autism Awareness stampede fast approaching, I recommend reading and sharing TPGA's own guidelines on identifying autism pseudoscience, and the article from Ken Riebel of Autism News Beat To reporters on the eve of Autism Awareness Month. And heed Ken's advice:
"Keep your stories simple and focused. Unless you are familiar with the autism news beat, the more you venture into the weeds, the more likely you are to leave your readers with the wrong impression."
Any questions?

Monday, March 24, 2014

April 2014: What Do Autistic People Want, What Do Autistic People Need?

TPGA traditionally supports April as Autism Acceptance Month.

This year, our Autism Acceptance theme is actually a question: What Do Autistic People Want, What Do Autistic People Need? The media does ask questions about autistic people -- but it tends to write about autistic people, worry about autistic people, and make books and movies about autistic people -- without actually consulting autistic people.

If you don't believe us, try searching the Internet for most autism topics, then observe how outnumbered autistic perspectives are -- and how often buried -- compared to perspectives on those same topics by parents, professionals, "experts," or reporters.

So we're using April to ask our autistic friends and community members What Do You Want? What Do You Need? We'll be featuring the answers all month long. If you'd like to participate, or support your child or loved one in participating, please contact us.

Saturday, March 22, 2014

Should Parents Tell Employers About Their Child's Special Needs?

Anonymous

Kids with special needs have, well, special needs. These needs not only present my kid with a lot of challenges; sometimes they mean I need to take unscheduled time off work. (It’s just how it is.) Aside from the time I need for standard IEPs, evaluations, school visits, and the like, my kid has also spent a fair amount of time in the hospital. My kid isn’t the type you leave and say, “be nice to the nurses.” You just don’t do that to a minimally verbal kid with intellectual disability. When my kid is in the hospital a parent has to be there. Which means no work during that time.

When my kid was in the hospital, keeping my manager in the loop was not my main priority. I thought leaving a message on his voicemail, such as, “I’m in an ambulance with my son. It’s two AM and I’ll be out tomorrow” was sufficient, but I didn’t think about the fact that these stays might be multi-day stays, so my manager needed updates. I dropped the ball on that a few times. I was somewhat preoccupied and didn’t realize that follow up calls were helpful to him.

What I also found was that even in today’s society, some managers think that taking care of a sick kid is a mother’s job. My manager didn’t realize that yes, indeed, my son’s mother was taking off as much if not more work time to be at the hospital as I was. All my manager knew was that on days I was out I was working part time, remotely, from the hospital. And, as I later learned, he resented the time I was taking off. My company had a very liberal sick time policy and I was told I was “taking advantage of the system.”

So when I decided to change to another job, I told my prospective future company about my kid and the fact that it was more likely that I’d take emergency time off than the average employee. That I’d endeavor to communicate well in those events, having learned the importance of communication from my previous job.

In the end no emergencies came up in my relatively short time with my new company. I had almost no lost time due to my kid. In fact, I was so eager to make an impression at my new position that I didn’t take as much time to stay in good contact with his teachers. I probably took less time away from work than an average parent would.

The new company and I ended up not meshing well, and I decided to find another job. When I informed my manager I was leaving, he was a bit surprised and clearly unhappy with my decision. But his explanation for why I was unhappy in my job didn’t match what I had just told him, which tells you a bit of why I was leaving. As he tried to convince me to stay, he told me he “understood” that the pace of the job was probably more than I was used to (bad enough when my complaint was that there wasn’t enough work for me) and that “my family situation” (code for “child with special needs”) was affecting my ability to work. I know this guy well enough to understand what he was doing: he was thinking out loud. Thinking of the story he was going to tell his management for why I left. And, of course, making sure he would not be blamed.

As I’ve said: if anything my job was taking away from my ability to spend time with my kid with special needs, not the other way around. You can imagine at this point pretty much any chance that I might stay with that company was lost.

I know I set the stage for my ex-manager’s response by telling the company about my kid, but I never expected my disclosure to be used against me. People who don’t have kids with complex needs can’t fully comprehend my work situation, just as I don’t fully comprehend the situation of parents without a kid like mine. I don’t think there’s a good excuse for my manager creating the false story that my kid kept me from doing my job, but I relearned an old lesson: don’t make a big deal out of having a child with special needs. I usually don’t. He’s my son, and I’m very proud of him just like any other parent is proud of their kid. I have no intention of pretending he’s anything other than who he is, if the subject comes up.

Just like the other parents at any job I have, caring for my child will cause me to miss work. Maybe I’ll miss more work than other parents, But what I’ve learned is that I need to communicate about what is going on when and if it happens. And only then.

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.

----

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.

Wednesday, March 5, 2014

Best Autism Conference Ever: The UK National Autistic Society's Professional Conference 2014

Shannon Des Roches Rosa

I had no idea autism acceptance and understanding in the UK were so much more culturally ingrained than in the US. Granted, there is still much work to do, and government cutbacks in housing for people with disabilities continue, etc. But the disconnect was shocking. And, I was told, much of it had to do with the National Health Service covering autistic people's needs as a matter of course. Families don't need to worry about paying for autism services; they need to worry about getting their kids and family members and selves appropriate services. As a result, according an American parent friend who lives in Yorkshire, there is much less of the catastrophizing of autism than we see in the States.

I witnessed these attitudes and approaches during the National Autistic Society's (NAS) Professional Conference 2014 in Harrogate. I saw an effective national autism organization that includes and supports autistic perspectives and needs and makes those factors primary, while still very enthusiatically supporting and educating parents and professionals. That provides families of newly diagnosed kids with several weeks' of educational classes, plus home visits. That had a large number of autistic speakers at its conference for professionals. It was a revelation.

The conference's accessibility was also impressive: the NAS provided simple live captioning service and sign language translation. There was a Quiet Room. The facility had ramps and elevators everywhere, plus the auditoriums had warning signs notifying those who entered that strobing lights might be used. And the official NAS mantra was on every banner:

Description: Black words on a white background atop a
horizontal red line, reading "Accept difference. Not indifference."

photo: Peter Vermeulen
I was there because filmmaker and autism sibling Saskia Baron kindly advised the NAS to invite me to give a presentation on iPads and Apps for Learning and Leisure. I showed up in standard conference mode: excited to be of use in sharing information that attendees would hopefully find helpful. (Autism consultant Dr. Peter Vermeulen tweeted that I told a "Very balanced story about apps for autism: presenting the advantages and opportunities as well as mentioning some caveats.") But I did ever so much more learning than I did educating.

Consider some of the NAS officials' conference opening remarks:
"The role of the is to challenge misconceptions about ." -Mark Lever on the media's "poverty of understanding"
"We need to put the child/person at the center of what we do. Proper support means happiness, independence, employment."

"The is working to capture actual numbers of people in local health authority areas. How else can people be supported?"
The media's misconceptions about "shirkers not workers" is one hurdle in the 's working towards positive representation.
I sat through Autistic-focused, autism-positive-yet-pragmatic session after session in a state of surprised delight. I live tweeted most of the presentations I saw, but as tweets are not that accessible after the fact, I storified the tweets from several presentations for archiving and sharing purposes. Hopefully these Stories will give you a sense of how fantastic the presenters and their talks were. (Any errors or omissions are my own.)

Autism researcher and anthropologist Dr. Roy Richard Grinker's presentation The Cultural Origins and Futures of Autism Spectrum Disorders. Excerpt:
"If something is cultural, it's not fixed. We made it. That means we can change it, e.g., negative attitudes towards ."
Autism educator and consultant Dr. Stephen Tyler's presentation Severe Challenging Behaviour: Impact, Perceptions and Support. Excerpt:
educational consultants should be called in to observe situations that work as well as situations that don't.
Autistic Advocate Ros Blackburn's presentation Logically Illogical: Autism Insight and Information. (For those unfamiliar with Ros, she helped Sigourney Weaver shape her autistic character in the movie Snow Cake.) Excerpt:
"If any of you can identify a behavior that is unique to autism I'd love to hear about it." -Ros Blackburn
Autism educator Phoebe Caldwell DSc.'s presentation Sensory Issues in Children and Adults With Autism: Excerpt:
"It's become very clear to me recently that we cannot tell how bright a child is until we look at sensory deficits." .
Autistic advocate Olley Edward's presentation Why Aren't Normal People Normal. Olley has been denied an autism diagnosis. This injustice informs her advocacy work. Excerpt:
.@OlleyEdwards can make fantastic eye contact. She is an accomplished actor. She is also .
Autistic Artist David Braunsberg & Autism Consultant Dr. Peter Vermeulen. Presentation and Interview: Focusing on the Positives: Measuring Outcomes for Autistic People From a Different Perspective. Excerpt:
"We shouldn't want people to be less autistic. We should want them to be autistic and happy. -@Peter_Autisme "
Please feel free to leave comments or questions (or to tell me what a Pollyanna I'm being). But even if I'm mistaken about UK attitudes towards autism in general, I know what I saw at the conference itself: autistic people, and people who accepted autistic people for who they are, and who were working to improve autistic people's quality of life. I hope American autism conference organizers are reading this post, and taking extensive notes, because American autistics, families, and professionals deserve a conference like the NAS Professional 2014.