I read an article the other day that gave a lot of statistics about how teenagers who have autism spectrum disorders receive significantly less case management services, therapy, and medical care after they leave high school. That does not surprise me. Then earlier today a colleague was asking about interpretive phenomenology. That made me think I should write down this story. It gives a different perspective on the problem that moves a little beyond the statistics in the article referenced below.
Cindy's mom called the other day, and I was pretty certain she was calling about concerns with her young preschooler - who is 4 years old and has PDD-NOS. I evaluated Cindy about a year ago and helped the family engage their local school system for services.
Instead she was calling about Emily - and I recalled that she told me about an older daughter who also has an autism spectrum diagnosis. Her older daughter graduated from high school last year and now was not getting any services and was not enrolled in any programs. The mom wanted to know if I could help.
Emily is an eighteen year old young woman who walked into the office on impossibly high heels, chewing gum, and grinning broadly because she only has the cares of a teenager. She was using IPod ear buds which her mom had to ask her to remove, "You know it is rude to have those things in when you are meeting people!" her mom chastised. She seemed like a very typical teenager, but perhaps just less emotionally and socially sophisticated.
Emily recently graduated from high school after a very long and not always successful academic career. Her curriculum was modified so she did not receive a Regents diploma - and she reportedly was not eligible for participation in any post-secondary education unless she took and passed a GED examination. "I was just tired of school," she explained. "I just thought it would be good to take a break." She never participated in any pre-vocational programs and never had a job. She is able to read on a third grade level and can complete simple math problems. She has a lot of orthopedic problems with her feet and knees from years of toe walking. "The high heels were her idea," explained her mom. "She figured that if she wore heels that people would stop asking her why she walked on her toes." It wasn't a bad idea on its surface, actually, but years of toe walking were causing abnormal biomechanical stresses and severe deformities in her feet.
The plan to stay home and take a break sounded relatively reasonable to me - but I also know that a stay-at-home teenager wears thin on parents pretty quickly. It took around 3 months for the family to figure out that talking a break might not really be the best idea.
The problem that they now faced though was that there was no interface into any care systems. The school system was all too happy to wash its hands of the 'problem' of having to develop a transition plan. The family wanted a break and did not want a referral to any programs. That meant less work for the school - and they were very quick to oblige.
I understand that the family has a right to decline services, but it is unfortunate that there was not a better safety net in place that ensures some degree of continuity of care. The problem with this approach taken by the school is that it is just kicking a can down the road. When the time comes for referrals to be made there are no guide rails on the road for this family. There are no systems in place. There is just Emily, who has never taken initiative because the system does not encourage it, suddenly adrift in a very big world.
Emily spends her days listening to music, watching television, and accompanying her mother on errands. She doesn't have any friends. She has a thought to be a fashion designer someday. I'm not so sure how that can happen.
In addition to the foot deformities Emily has severe knee, hip, and back pain. "There isn't much that relieves the pain, except rocking on my back." With a quick "Do you mind??" and without waiting for any answer she lowered herself onto the floor, re-inserted the ear buds, extended her spine into an opisthotonic position and began rhythmically rocking back and forth in her own world as the music blared in her ears.
Emily did not seem to notice or perhaps care that other people in the clinic were watching.
The parent continued talking without pause as Emily remained on her back, rocking back and forth on the floor of my clinic. She was worried for Emily's future, worried about Emily's leg and back pain, and worried about whether they made the right choices as she was leaving high school.
As I listened intently to the parent and observed the confused reaction of people watching Emily I wondered where to possibly take the first movement toward a solution. It is my job to help solve these problems.
Emily rocked and rocked.
JAMA and Archives Journals (2011, February 7). Relatively few young adults with autism spectrum disorders receive assistance after high school. ScienceDaily. Retrieved February 14, 2011, from http://www.sciencedaily.com /releases/2011/02/110207165506.htm