Sorry I’ve been a bit tardy about keeping you up to date, too many irons in the fire, which I’ll explain shortly. I’ve been giving a lot of thought to a cirtical issue that every parent of a child with autism faces, what will life look like after high school. Our grandson Michael is right in the middle of that process. That’s what this Oughtism is about.
A study published last November in the Journal of Autism and Developmental Disorders confirmed what many people have known for a long time, namely that people with ASDs are more likely to be interested in factually-oriented scientific fields of study that capitalize upon memory for details, rather than those based on abstract concerns most often associated with the humanities. The study showed a modestly larger percentage of kids who attend college enrolled in the sciences or math than their non-ASD peers (about 32% to 22%).
The bad news is that kids with ASDs on average have among the lowest college enrolment of young people with 11 different disability categories. When your son or daughter with an ASD reaches 7th or 8th grade you and they should begin thinking about a vocational future, but not necessarily mainly on academic achievement. In reality, the reasons higher functioning children with ASDs attend and succeed in college has much less to do with their specific academic grades than in their social adjustment, communication ability and emotional stability, especially their ability to follow the complex social rules, and cope with the stress of being a college student. Few of the critical issues are about subject matter:
Selecting the right college. Small is usually better. A clearly structured academic program, a good disabilities services program, willingness to provide modifications and support for learning needs, and a counseling center with support services.
Availability of coaches and/or tutors to assist with the non-academic as well as academic aspects of college, such as where to sit in class, planning and organization of learning materials, scheduling study time and distraction free place
Liaison with professors. Many classes that require vocal participation in class will be intimidating to students with autism and may require the intervention of a coach or tutor with the professor to arrive at some accommodation.
Avoid courses that require abstract verbal reasoning, flexible problem solving, extensive writing, or social reasoning which are often challenging for kids with ASDs.
Planning and coping with the very complex array of social demands of daily living, such as meal plans and their rules; where to eat at non meal times; laundry; spending money; budget; using a campus ID and charge card; dorm rules; using communal bathrooms; transportation; campus maps; finding rest rooms; using the alarm clock; e-mail and instant messaging; how lectures work, and on and on and on.
Gladys Williams and Ann Palmer of the University of North Carolina’s TEACCH program have written an excellent article with additional advice for parents and HFA students from which much of my remarks are borrowed. Among other things, the site recommends several resources:
Liane Willey’s book, Pretending tobe Normal, and in A Parent’sGuide to Asperger Syndrome & High-Functioning Autism, by Sally Ozonoff, Geraldine Dawson, and James McPartland. AquamarineBlue 5: Personal Stories of College Students with Autism, edited by Dawn Prince-Hughes, has 12 essays and an appendix of tips. A recent addition is Succeeding inCollege with Asperger Syndrome: A Student Guide, by John Harpur, Maria Lawlor, and Michael Fitzgerald. You can get all of them through Amazon or the publishers
See also the survey by Wei, X et.al (2012) Journal of Autism and Developmental Disorders. November 2012. You can find the abstract at the journal website.
Though it’s still early in the year, it’s not too early to begin thinking about summer. Your family probably plans a vacation together, i.e. a trip of some kind. That can be great fun, but also Stressville time for kids with ASDs. Second, what do you do about continuing your child’s early behavioral intervention or therapy? Third, should you enroll your child in some kind of summer camp program, and how do you decide which? Fourth, should you try to shoe-horn in some supplementary lessons of some sort, like speech, therapeutic horseback riding, swimming etc?
Family vacations usually have priority, but before look at vacation brochures, talk with your child’s lead behavioral intervention therapist about policies regarding vacations. Most providers have specific policies about how long you can be gone without giving up your child’s slot in the treatment program. Being clear from the outset is best. While family time is important, part of the decision depends on where your child is in her/his therapy.
Summers can a good time to add other activities to children’s schedules, within reason, but generally not at the price of reducing therapy intensity. About 2/3rds of the most important therapy gains are made in the first 12-18 months. If you’re child is in year 3 of therapy, reducing intensity for a couple of weeks may not significantly reduce gains, but could have a bigger impact if she/he is approach their 14th month of therapy.
Summer camps can be terrific experiences later in therapy. Groups of running, screaming children having a great time at outdoor sports and games can be frightening to a child who is just becoming a little comfortable around others. If you are going to add summer activities in the first year or 18 months of intervention, quieter small group options are a better choice. In the final year of therapy, summer camps can be great transitions to graduation.
|Here I am speaking at the ABAI|
Conference in Portland
This year’s Assn for Behavior Analysis International Autism Conference in Portland OR provided an entire day specifically designed for parents. It was a real winner. All the speakers were asked to address specific topics parents most often ask about. Not only that, all of the speakers are highly regarded for their skill in communicating with parents. The reaction from parents who attended was wonderful, they loved it, and enjoyed meeting some of the “rock stars” of applied behavior analysis and autism. Considering such a stellar opportunity tailor-made for parents, we didn’t do a very well getting the word out to the parent community, especially in Oregon and surround states (the Conference was convened in Portland January 25-27th). We’re going conduct a survey of parent attendees to see how we can reach more people like themselves who could have greatly profited from hearing from such world class presenters as Bridget Taylor, Mark Durand, Catherine Piazza, Peter Gerhardt, Marjorie Charlop, Meme Heineman and parent presenters Sabrina Freeman and Kammy Kramer, and of course, yours truly. If you have thoughts about ways in which we can more effectively reach out to parents, let me know.
What I’m Up To
I was running around like a chicken with my head cut off during the month of January preparing for the big autism conference. No rest for the wicked. Immediately after the autism conference concluded my colleague Wayne Fisher and I flew to Tampa, FL to take part in an AMA Task Force meeting that is exploring procedures for billing for ABA autism services. It was an enlightening and encouraging meeting. More instalments to come.
Finally, not to let any moss grow in the rolling stone, I just completed a long over due article reviewing what is known about behavioral, social and psychological treatment of individuals with autism, mostly younger children, and the reasons behind the large, unproductive schism in the field. The article will be in print in late March or April titled, “Autism research and services for young children with autism: History, progress and challenges,” Journal of Applied Research in Intellectual Disabilities. 26 (2): 1-27. I think it’s a keeper.
Quote of the Week
Since this week includes Valentine’s Day I thought I would be fitting that we remember that Feb 10, 1846, Edward Lear's A Book of Nonsense was published, and as you will recall, Lear was author of The Owl and Pussy Cat, which was originally published in the children’s magazine Our Young Folks with the illustration below.
“The Owl and the Pussy-Cat went to sea, In a beautiful pea-green boat. They took some honey, and plenty of money, Wrapped up in a five-pound note. The Owl looked up to the Stars above, And sang to a small guitar, 'O lovely Pussy O Pussy, my love, What a beautiful Pussy you are You are What a beautiful Pussy you are.”