Frequently, I get calls from adults thinking that they have ADD, ADHD, attention deficit, autism, Asperger’s, or some combination of these symptoms. Usually, they’ve never been formally diagnosed with anything, but they’ve researched online and they’re pretty sure about the pattern that fits them. So the question is: How good are online screening tools?
To start, how does a professional diagnose autism, Asperger’s, ADHD in adults? There is no easy blood test or brain scan to make these diagnoses. Generally, a professional will look at the patient’s history, especially problems and symptoms, administer some screening tests, and then use their clinical judgment to come up with a diagnosis. Unfortunately, the most frequently used screening measures are designed for children, so working with adults requires some adaptation. Clearly, testing is a bit more involved than just the online screening tests individuals take.
What about confidentiality? Many individuals are concerned about a diagnosis going on their record, getting back to their employer, or some other worry. This shouldn’t keep you from working with a professional. Before you see any professional, ask about confidentiality. Specifically, discuss how you’ll be paying for treatment, and what kind of confidentiality insurance plans or employee assistance programs offer.
What about online screening tests? For some people a doctor’s appointment may be too expensive, or intimidating, or complicated. Other people want to be informed before they talk to a professional, so online screening is a place to start. Taking an online screening test is not a bad starting point in understanding yourself, although it doesn’t substitute for professional help.
When looking for a screening tool, it’s probably best to go to larger organizations rather than individual’s websites. Often, the best known and most popular measures are not available online, and professionals have to purchase them, so although they may be well written and well researched, you’re not going to find them online. Also, I don’t like measures that merely repeat back a symptom list from the DSM. The DSM is written for professionals, and the symptoms may be tough to interpret without training and experience dealing with a large group of individuals having those symptoms. You can also find excellent self report measures in books. Again, look for the credentials of the author writing the book, or a forward by a well known professional.
A good general rule: books and websites written by individuals diagnosed with an issue can be interesting and informative, but they’re not the best way to diagnose yourself. Books written by actors, politicians or playboy bunnies may be enthusiastic, but they are not the best sources of science. Get professional information from professionals.
Some examples? For depression and anxiety, David Burns has written excellent books with self assessments in them. For ADHD, you can find self measures on both the CHADD and ADDA websites. For Autism and Asperger’s, check out Simon Baron-Cohen’s book or website. For alcoholism questions, The National Institute on Alcohol Abuse and Alcoholism has a clinician guide with questions.
I’ve written on several occasions about Stanley Greenspan, M.D. and the DIR® Floortime™ program. I really like this program for several reasons. DIR® Floortime™ can be done by parents, in the home, it doesn’t have to preclude the use of other therapies, such as ABA, and it is very much a social and relational based model, which makes sense to me as a psychotherapist. Of equal value, parents can get started pretty quickly, by reading books, joining an online group, or taking courses, even if they’re waiting for a diagnosis, or in a long line waiting for services. If money is tight, parents can get training relatively inexpensively, and get started without a huge investment. The model helps parents learn to interact with their children in a more engaging manner, taking the child’s developmental level into account and gently helping the child to progress. For parents hoping to enhance their child's social skills, DIR® Floortime™ can be a great place to start.
Stanley Greenspan, M. D. is presenting the Basic Course on the DIR® Floortime™ Model online for parents and professionals, starting on March 12, 2010. I took this online course a few years ago, and really appreciated the ability to take it from home, review the materials as many times as I wanted, and the chance to see Dr. Greenspan in action with children, as well as the relatively low cost. There are also a few workshops being offers, A Lifespan Approach to Autism, Meltdowns, and Regulatory Sensory Processing Disorders.
It seems like the word “Neurodiversity”, and the ideas of respect for autism rights that it represents, comes up more and more frequently online and in print. Yet, at the same time, I find that most of the individuals I meet, frequently parents of children with autism or Asperger’s, as well as adults who think they may be autistic or have Asperger’s, have never heard of the word neurodiversity. In this posting, I wanted to list some links to websites that deal with neurodiversity, so my readers can explore these ideas on their own.
The Oxford American Dictionary that came with my Mac, copyrighted in 2005, does not list the word “neurodiversity”. You’re going to need something more up-to-date. You could start with with WordSpy.com, “The Word Lover’s Guide to New Words.” This site defines neurodiversity as: “The variety of non-debilitating neurological behaviors and abilities exhibited by the human race.” Of more interest is that the site lists sample citations of the word, in the New York Times and Geocities, and the earliest citation of the word, in the Atlantic Monthly in 1998.
For a different, and somewhat more positive, definition, try Everything2.com which defines neurodiversity as “The concept that variance in neurological structure adds needed diversity to the human race. The celebration of that diversity. Or, a word referring to the variety of ways in which the human brain can be wired.”
You can find a very inclusive listing of neurodiversity resources and websites at neurodiversity.com
For a frequently cited voice of the autism rights movement, go to ASAN. The Autistic Self Advocacy Network, defines itself as:
“.. a non-profit organization run by and for autistic people. ASAN's supporters include autistic adults and youth, those with other distinct neurological types and neurotypical family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. Our activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of autistic cultural activities and other opportunities for autistic people to engage with others on the spectrum.”
The founding president of ASAN, Ari Ne’eman is featured in the public service announcement, “No Myths”, along with other autistic individuals.
And, just this week, Salon.com published "I am not a puzzle, I am a person", by Elizabeth Svoboda regarding the “autism culture movement.”
The online resources are endless, and I’m sure I missed some very important ones, but this list is a place for people to start exploring. If I have missed your favorite site, please send me a comment.
Floortime/DIR is Stanley Greenspan’s Developmental, Individual Difference, Relationship-based Model for the treatment of Autistic Spectrum Disorders (ASD) and other developmental disorders. The method teaches a way to assess and interact with children who may not be able to connect in more traditional ways. The online Floortime/DIR conference is starting in April and registration is open now. It’s open to both professionals and parents.
I attended this online conference last year, and I was really pleased with the material presented. Greenspan’s books are also packed with information, but the online conference gave access to a number of video tapes of Dr. Greenspan and other professionals working with families. The tapes could be viewed repeatedly, in order to really capture the subtleties of Greenspan’s interventions. After instruction, the parents were able to change their interactions with their children and the viewer could see the results of these changes. Greenspan then commented on the tapes.
There was also a forum for those who want to ask questions or connect with others attending the conference. Many local groups, including one here in the San Francisco Bay area, formed after the conference.
DIR/Floortime can be used by families all the time, for every interaction with their children, but it can also just be a way for parents to rethink how to engage their autistic kids. Because parents are the ones working with the kids, it can be quite a bit less expensive than other interventions, and of course, the intervention can be quite frequent, since parents get to be with their kids on a daily basis.
Check out this link to the conference if you’re interested, and thanks to reader firstname.lastname@example.org for the comment that directed me to the registration site.
ASAN, the Autistic Self Advocacy Network, has begun to sponsor a new Yahoo group for teens on the autism spectrum. Participants can be self diagnosed, and they must be at least 13 years of age. This group is being moderated by ASAN adult members. You can get more information on this group from the Southwest Ohio chapter of ASAN's blog.
I'm a big fan of this type of group. Many adults are wary of online interactions, and they think they're inferior to face to face communication. I don't think that's the case. Online is different, not necessarily inferior. Face-to-face friends are not always possible. Many kids on the autism spectrum are outcasts at school, maybe the only one with their diagnosis in the entire class or even grade level. These teens may not fit in with the other neighborhood kids, or with kids they meet on teams or in groups. Online communication can allow teens to feel connected to others who they may have a lot in common with. The online medium allows teens to filter out some really difficult and distracting social cues and still be a part of a community. It's tough to feel different, and this group will allow some teens to take an important social step. I hope parents will consider this group for their teens.
It's important for parents of kids with a diagnosis of autism or Asperger's to become well educated on the topic, but the task can be overwhelming, and confusing. That's why I'm excited to be adding a link on the side of my blog to Translating Autism, a blog written by "Nestor Lopez-Duran Ph.D., a clinical psychologist and neuroscience researcher working at a university-based child psychiatric institute in the mid west." This is a new blog, started in 2008 with the goal to "disseminate scientific findings in childhood onset disorders in a format that is useful and accessible to parents, educators and clinicians."
The internet is filled with information on autism, both fact and opinion, and it can be overwhelming to sort through everything out there. Translating Autism shows the latest research and gives the source of the information as well. The blog says that it discusses information from peer-reviewed journals, which I think is an important detail. (For those who aren't familiar with the term, articles in peer reviewed journals have undergone an analysis from other experts, generally to ensure that there's some scientific validity to the research methods. Clearly, not every example of poor science is found, but I think parents can generally trust information in peer reviewed journals more readily than claims that are just published elsewhere online.)
I found this blog's tone to be pretty accessible technically, written in an interesting manner, and I think it will be helpful to parents as well as adults trying to understand their own diagnosis. Of course, as the blog's author states, it's important to talk with your own medical doctor before taking any advice from a website. Please check it out and see for yourself.
Patricia Robinson MFT
I'm a licensed therapist in Danville, California and a coach for Asperger's and ADHD nationwide. I work with individuals of all ages who have special needs, like Autism Spectrum Disorders, ADD, ADHD, and the family members and partners of special needs individuals.