For many of us ASD parents, our child around age 2-4 years old is not hitting developmental milestones and we begin to get inkling that he or she is on the spectrum. We take our child for all sorts of evaluations and after some time and patience, we are told our child has autism. (see our Timeline of a Diagnosis if curious). We are often given lots of recommendations for immediate action: behavioral therapy, speech therapy, play groups, IEP info, etc., all the makings of early intervention. What we are not given is any type of prognosis or long term plan. We live day to day, month to month, and as time goes on, maybe year to year, but nothing beyond.
When Ethan was two, he was non-verbal (both expressive and receptive), very socially disinterested, had self-stimulatory behaviors, and that general 'spaced-out-ness' of an autistic child. He did show some cognitive ability (puzzles, shape sorting, organizing), which was a good sign. In our preliminary school district meeting/evaluation, Ethan played off in a corner full of toys. Ignored the 6 adults (including us) having a meeting and basically and ignored the adults who, one at a time tried to engage him for evaluation, but as we were leaving the teacher suggested we go straight to the door to leave to see what Ethan would do. He caught us out of the corner of his eye and of his own accord came to us as we open the door to leave. We were told that was a very good sign.
But did all these signs mean? He did very well in behavioral therapy and progressed through new therapy topics quickly, he sight read at 3 years old, he read phonetically by four and a half, he was fully mainstreamed with an 1:1 aide in kindergarten, he became aide independent in middle school, he did well academically, but what did it all mean? He still (at 17) exhibits all of the criteria for a DSM diagnosis of autism. Where is his long term trajectory? That is the thing no one, and I mean no one talks about.
As the autism rates have skyrocketed for this generation (1 in 5000 in 1975 vs 1 in 250 when Ethan was born in 2001 vs. 1 in 68 today). Yes, some is due to increased diagnosis, but not all. So now, this huge increased population of Ethan's gen is now graduating a fair amount of high functioning individuals, what now? How are we to help them succeed?
The number of college programs to help matriculate students with autism is not proportional to the number of ASD students attending and will attend two and four year colleges. The vast majority of colleges simply refer you to their office of disabilities. Unfortunately, the people there have no experience or training for autism. They were set up to assist students with physical disabilities and learning disabilities (like dyslexia or ADHD). The office will help address educational needs and accommodations but have no support for social deficits.
There are a number of colleges that saw this black hole and began to create specialized programs. Here are a bunch of useful links to find schools with special programs:
Friendship Circle: 10 Colleges with Programs for ASD Students
The 20 Best Value Autism College Support Programs
Programs for Students with Asperger Syndrome
and here's a really good resource for your child to read themselves. It was written by autistic adults for the autistic student (in college or college bound).
Navigating College by ASAN (Autism Self Advocacy Network)
So this past year, I've done a bit of research and the bummer is that most of the really impressive programs are in the North East or South. After long talks with Ethan about college, he's very open and undecided about most things, but knows he wants to remain in northern/central California - driving distance from home. After numerous calls to the universities that we are interested in, we found that we will pretty much have to create our own support system for Ethan. This will involve the office of disability, but we will need to recruit and contract some sort of social mentoring for him as well as help to matriculate to the dorms and college life. More than anything we want to give Ethan every opportunity to be successful. Students with ASD have a much higher drop out rate than typical students. We're going to need to find resources for Ethan and enable his self advocacy.
We plan to visit a number of schools this summer and try to piece together ways in which we could get Ethan the support he'll need. We are looking for any and all suggestions and leads. Even if it's that someone knows a professor there or some really nice students who are attending there (both older and incoming freshman). At one university, I spoke with someone in a department that has courses on working with young children with autism. They have been proposing a program for the ASD students already at their college. Unfortunately, their funding was denied. The professor seemed as frustrated as me that the university isn't moving towards supporting ASD students. The good news is this one particular professor is sort of ad hoc helping out the ASD students who have sought her out (as well as continuing to propose formal support programs). I'm hoping to find more professors like her at other universities. An ally to help create a support and mentoring program.
This will be a summer of reconnaissance. We're also hoping that as Ethan visits campuses, he'll begin to form some sort of opinion on where he'd like to go. Personally, I'm leaning toward a school with an enclosed campus. I'm also thinking the smaller the better, however, that's tricky in California. Still 15-20K students with an encapsulated campus area could work.
It's going to be an interesting summer.