Tuesday, August 23, 2011

Have You Tried (X, Y, or Z) for Your Autism?

I was asked about my diet again, a question that seems to be asked about a third of the time when I discuss autism with groups. This inevitably leads to parents (and some support providers) starting to argue about the various "treatments" such as the gluten free diets or pressure chambers. Yes, I've been asked if I've tried everything from "detox" procedures to special pads you stand on to "drain heavy metals" from your body.

My blunt answer on diets? You do not want to take away my chocolate, processed sugar, and don't even dream of touching my pasta dinners. I'd rather die young than give up my favorite foods. My favorite foods are all "bad" for me, which is why I don't eat pasta or chocolate cake every night.

Caffeine makes me sleepy, as does too much sugar, so my wife is more than content to have me drink a mocha before bedtime. Personally, I prefer to stick to herbal teas with honey or Splenda. I do not get caffeine migraines, unless I'm already dealing with a headache. If I have a headache, I'm wise enough to know not to drink coffee.

I've had speech therapy, physical therapy (most recently in 2006), and educational therapy (ways to deal with reading and writing issues). I've written about my support experiences and I'm openly hostile to most therapies. They are not for me — they actually increase my anxiety and frustration. Physical therapy is about the only support I've found useful, especially for back and shoulder pain.

If you want to try a therapy, as long as it does no harm to your child, I'm not going to stop you. I've written that if you want to try something unsupported by research, I'll defend your right to do so within certain limits. I don't support your right to place a child at physical risk, but I also recognize I'm not going to persuade anyone that there are industries seeking to make money from autism "treatments" with little or no scientific evidence of success.

A few years ago, I met a Ph.D. from a University of California campus. She had a Ph.D. in something related to "holistic medicine" and a master's degree in "Native American Studies." She suggested I hang some odd looking wood and feather mobile above my bed to treat my sensory issues. Because she was a "doctor" parents took her advice seriously. She even suggested natural crystals for some health issues.

You want to buy crystals? My sister works in a store more than happy to sell you all the crystals you might want. They can also schedule an aura reading and tarot consultation. That's okay with me. Unless you are refusing basic medical care and supports for your child, try whatever makes you feel better. You have the right to try dreamcatchers and whatever you want.

The one "therapy" that made me cringe more than any other was bee stings. There is no way, none, that I would ever allow someone to use bee stings on me. How in the world does that treat autism? I already hate stinging insects. I have no desire to try them as a medical treatment. An alternative, offered for sale at a conference, was "special" honey. It looked like a dark honey, like I've seen at the Minnesota State Fair.

Sure, some "alternative" treatments have scientific connections. Bee stings have been found to affect people with some allergies. But that doesn't mean stings will cure autism or depression, two things I've heard at autism conferences.

When I speak, I tell parents I'm not going to recommend any "treatment" for autism. I'm not going to tell you what I believe "THE" treatment might be. I have no idea. What I do know is that someone makes money selling those hyperbaric chambers at autism conferences. Someone is making money selling crystals, too.

I like weighted blankets, but I don't consider them therapy. I like honey, too. I'm sure there are plenty of "non-autistics" who like weighted blankets and honey.

Many parents try everything and anything to help cope with the nature of autism. That's understandable. But, at my age, I'm not interested in experimenting with dozens of "treatments." Don't take that to mean that I don't understand your desire to help or your aim to help your child. I do comprehend that you are willing to try whatever might help your child. That's a normal impulse for parents.

Even if I had all the evidence in the world, I'm not going to convince one parent to stop an alternative therapy. I'm not going to persuade anyone that a diet might not be worth the extra money. All I can say is that nothing I tried really changed who I am or improved my daily experiences.

That's okay. I am what I am… with or without chocolate. So, I'll take the Tiramisu with cocoa after my baked seafood pasta at Little Italy. And then I'll take a nap.

Thank You, Readers

A nice note from a reader was helpful tonight.

My wife and I have been dealing with a lot this summer. July and August have been too busy and we're both exhausted. I've moved to another state, right after attending a conference for a week in Las Vegas. I had less than a full 24-hours between returning to Minnesota and driving to our new home in Pennsylvania. (And I had endured several minor foot surgeries, right before the Vegas trip and driving. Lots of pain.) Then, after the cats and I arrived, I had to deal with two plumbing emergencies, a home insurance issue, and one of our cats getting ill.

For almost two months, life has been tumultuous, at best. When J.C. passed away a few days ago, it was simply too much for me. I spent a lot of time hugging J.C.'s two brothers, hoping nothing else goes wrong. Alex goes to the vet tomorrow (Tuesday) for an exam because he's been losing weight. I never imagined the boys as anything but a trio, from the day of their birth.

Today I placed J.C.'s collar on Pumpkin. I told him to wear it with pride. I know Pumpkin doesn't understand, but he shredded his collar and needed a new one. It seemed right to pass along the collar to PK. I placed J.C.'s name tag next to Simba's old tag, the one she was wearing when we found her. And I felt myself getting teary-eyed.

Moving and starting a new job meant more space for the kids. More sunny spots and wonderfully large windows from which to see birds — and fireflies. I know I feel better in this house, but it still wasn't supposed to be without J.C. or Jordan. I had promised Jordan a nice sunny spot.

I skipped a faculty gathering this weekend because I didn't want to be around people without my wife. I must admit that one of the meetings I had last week didn't go smoothly; I said what I believe and what I know. I doubt my words were well-received. When I'm tired, I don't self-edit effectively, especially on issues of science and autism. So, I knew it was best to avoid people for a few days.

On Friday, I had to use my cane to keep my balance. It wasn't that my leg hurt, though it did a little, but that my body didn't want to follow my orders. It was like my body wanted to stay in bed and recover from everything. My arm was trembling, something my wife notices by the photos I've taken of the kids. The photos are blurry. When I'm tired, my body doesn't cooperate with my brain.

I'm anxious, and I know that the stresses of moving and starting a new job are affecting me.

This coming Friday, a tree that is damaging the house will be removed. The tree didn't choose to be where it is. The tree had no evil intentions when it started to push the wall inward, causing some minor damage. The tree is probably two decades old, maybe more, but it will now have to go so we — the cats, my wife, and I — can keep the house insured and continue to live here. Still, I feel sorry for the tree, though trees "feel" nothing. Even a tree can make me sad right now.

My support network consists of my wife, my family, and my cats. Cards from my sister have helped a lot this month.

Tonight, as I was getting ready for bed and feeling like I'll never meet my own standards in the new job, someone sent me a note that she had read my blog and bought the book to support what I do. A short note, thanking me for those times when I apparently write something useful for parents and teachers.

My mind hasn't been clear enough to make much progress on the next book, but I'll get back into a routine soon. I have to, because the lack of a routine is adding to my anxiety. I'd like fewer surprises in coming weeks.

Right now, I need to focus. I need to organize my time, stop getting distracted and moody, and get down to work. It would be much easier with my wife here to help, but she needs me to get back on track, too.

I've gotten used to skimming through hate mail, so when someone sends a nice note or a mention on Twitter it surprises me. Maybe I've come to expect the worst when I read my mail; experience has shown that people don't send many nice notes about the blog or my public appearances. When someone does thank me or say something nice, it restores my energy. It seems the nice notes come at the right moments, too. It means a lot to me that someone bought a book simply to show appreciation. At the same time, it makes me feel like the next book has to be much, much better so it won't be a charity purchase.

For now, I simply wanted to acknowledge that nice notes help.

Friday, August 19, 2011

J.C. Kitty

These are some rough notes from my wife and me, regarding J.C. Kitty.

It was early the morning of May 1, 1995, when Scott heard the cries of kittens from the shrubs under his bedroom window. There was a stray female we called “Momma Kitty” at the apartment complex where we lived; she had given birth during a rainstorm. When Scott checked, there were three tiny kittens. We monitored them for as long as we could, before deciding the bring them inside the apartment to protect them.

While we hadn’t planned on adopting them, we ended up keeping them together. In the early years, Scott would take them outside in his lap to see Momma Kitty. We’d like to think that she understood they were safe and loved.

J.C. Kitty

Julius Caesar
J.C. was a soft, easy-to-purr, relaxed gentleman. Definitely not the dominating Gaius for whom he was named. His coat was fine and soft, a fluffy and cuddly boy.

When we rescued the boys, J.C. was the first to climb into laps and look for people. One reason we saved the boys was because J.C. was starting to wander from the safety of bushes. He didn’t see any reason to fear people or other animals.

J.C. was a “happy-go-lucky” cat with a purr motor that rarely stopped. You could hear his purr from across a room. He didn’t fear anyone, and would purr for any person willing to show him a little attention. He would even purr for the vet technicians during exams, right until his final weeks.
Nothing, not even traveling from California to Minnesota or from Minnesota to Pennsylvania seemed to upset him. As long as he could look around, J.C. was calm and even happy. J.C. was also one of the most low-key cats we've seen.

A Great Papa Kitty
You might say he was a hero. He was the most “parental” and nurturing cat in our lives. Any cats we rescued, he wanted to play with them and help them. He was gentle and protective of kittens. J.C. was even a blood donor for Simba before she died. He helped her feel a little better before her body failed. J.C. was a great adoptive papa kitty.

J.C. was so laid back that even Pumpkin Kitty was relaxed sharing space with him. It was impossible to feel tense knowing all you had to do was look at J.C. to start up his purr motor. He helped Pumpkin handle the moves, simply by being a good travel companion.

Playful and Active
A very active bundle of energy, J.C. loved “wrestling” and playing until his last few weeks. In his younger years, J.C. was quite the jumper. His favorite game was to try to catch a paper ball being tossed down the hall. We’d sit at each end of a short hallway and toss the ball several feet into the air while J.C. would jump to swat at it. More often than not, he'd manage to swat the ball back at us with his paw. The last time we really played paper ball was in our Bloomington, Minn., apartment. That was in 2006, right after moving to Minnesota for graduate school.

Loved His People
For the last few years, J.C.’s favorite nighttime sleeping spot was sharing a pillow with one of us. He’d climb the stairs onto the bed and amble up to plop down with his front legs and face propped up on a pillow, right up next to one of our faces. He particularly liked it if Sue would hold his paw or if his paw was on top of her hand while she went to sleep listening to a very loud purr motor running next to her head.

J.C. spent his last night sharing a pillow with Scott.

The Final Weeks
The weekend of July 30-31, 2011, J.C. started to drool with spots of blood. We thought he might have chewed a cardboard box or some plastic, a bad habit of his. Sadly, he was diagnosed with oral cancer on August 2 and underwent emergency surgery the next day.

The surgery went well, but the cancer had already spread beyond his mouth. He also was suffering from dehydration and partial kidney failure. The cancer was a particularly fast moving form of oral cancer. Less than two weeks after receiving laser surgery to remove the cancer from his mouth, his drinking slowed and he stopped eating.

He was hospitalized from Monday afternoon, August 15, through Wednesday afternoon to receive IV fluids in an attempt to reverse his dehydration. He seemed perkier after receiving the fluids. Tuesday afternoon he looked a lot better and purred and demanded attention from Sue when she visited him in the hospital. He went home Wednesday afternoon with Scott, but the cancer had caused enough damage to his throat and lungs to create problems breathing overnight. By dawn, he was only semi-conscious and by the time the vet opened on Thursday morning, J.C. was unresponsive and barely breathing.

J.C. passed away at 10:30 a.m. on August 18, 2011. He spent the night next to Scott, sharing a soft blue pillow. J.C. was too tired to drink or eat that morning. Scott held him and talked to him for several hours, knowing J.C. was out of energy — after having been active and happy until those last few weeks.

He will be missed.

Thursday, August 18, 2011

Dealing with Loss

J.C. Kitty passed away this morning, August 18, 2011. I'll write about him in a day or two. This is a very difficult loss, due to his personality and coming shy of a year after the loss of Jordan. J.C. and Jordan were the two most affectionate and playful cats with whom we've shared our lives.

Animals have personalities, and J.C.'s was special. He was 16 years old and will be missed.


I miss Jordan almost every day. Our feline kids are family. They have each added to our lives in their own way. Fido, Simba, Jordan, J.C., and many others over the years. Cats and dogs, all of them good friends.

Wednesday, August 17, 2011

How I Reset from Stress

One of the questions I am asked at conferences and presentations is how I "reset" from stress or a meltdown. Once my senses are overloaded by sounds, sights, smells, or other sensations, how do I regroup to work the next day? This question also applies to emotional overload — and having a pet going though some tough times is stressful lately.

Here are my coping strategies, in no particular order:

Get away from crowds and people. If I'm in a city, I need to head for a park or out of the city if possible. Cities by their natures have too many inputs. "Normal" people eventually treat the inputs like white noise, but my wife likes to say I have the senses of a hunting dog. I hear and smell everything. In Minneapolis, we'd head for the Landscape Arboretum. It is south of the city about 45 minutes. Sometimes there are a lot of people, but the park is large enough to avoid any crowds.

Now that we live in a rural county, I like to sit on our front porch in the evening. It is quiet and relaxing, especially on clear nights when you can see the stars.

Listen to music. Classical, new age, some "Big Band" era, and soft jazz all help me relax. I also will dig out my clarinet or sit at the keyboard and play (badly) to relax. Music lets me focus on the notes, instead of the world around me. I love patterns, and music is all about following the patterns and rules.

Sit somewhere dimly lit and read. The loss of libraries and bookstores will pose a problem, someday soon. I like to sit and read in quiet spaces when I am stressed. Books are great friends and companions when I'm stressed.

Bake cookies. Yes, cookies reduce stress. How can you eat a warm chocolate chip cookie with milk and be stressed? I love baking because there are so many things to try. We have a lot of books with cookie recipes. When we try something new and it works, we make a note in the cookbook and my wife adds it to our database. When I'm really stressed, I stick to recipes we know work well.

Soak in a warm bath. Sitting in warm water is soothing, especially if my muscles ache. I don't like to soak too long, because the "prune" effect bothers me, but a few minutes can help me regroup. Plus, you feel cleaner and that's a nice thing.

Sit with my cats. Purring cats help reduce stress, unless they are the stress.

Sunday, August 14, 2011

Yes, We Judge Others

One of the simple truths of life: we all judge other people. This is, according to some evolutionary psychologists, a beneficial trait. We judge in an instant in order to preserve ourselves. We see patterns in our experiences and use those to predict new experiences. If I've been attacked by men in blue shirts several times, it makes sense that I might be afraid of men in blue shirts. That's not prejudice — it's caution.

When I wrote about The Mediocre, it was a reflection not only of psychology research — and there has been a fair amount of research on unconsciously mean people — it is also a reflection of experiences with unhappy people. Sadly, there are some very unhappy people online.

Angry, unhappy, discontented people do make me uneasy. And you can tell that some people are "happiest" being angry. Some, but not all of these people, seek out conflict. They can't simply disagree and keep quiet about it. I had a colleague who liked to visit Christian websites and tell believers how stupid they were for having faith in anything. I wonder if the parallel is people who feel compelled to go to some autism community forums to tell the members how ignorant they are? We know people do this in political forums. Why "troll" online to cause fights? I don't understand that impulse.

I used to try to understand and appreciate everyone, but there was a point in the last six years when I realized there are mean people who are either convinced they aren't being mean or are certain their meanness is entirely justified. I'm reminded of fictional villains who are certain someone wronged them, so they turned to crime and destruction in pursuit of "justice."

In autism communities, there is a lot of anger and a lot of stress. There is a sense of being victimized by someone or something. So, people lash out and attack. Some attack science, while others attack segments of the autism community. At some point, I simply cannot accept any justification for the anger and vitriol, even if there was an "original sin" that started the spiral. Someone has to be mature enough to stop feeding the anger. But that's just not human nature.

I don't like many autism therapies or supposed cures, but you won't find me posting to websites and forums associated with those treatments. I'm not going to seek out people to criticize — that's just not helpful. If you don't want my view on those issues, you don't need to read my blog. I'm not seeking to persuade anyone on other websites on any particular point.

Autism has so many unanswered questions that people find their own answers… and stick to them no matter what. Why try to argue these points on other forums? I'm not going to change any views with my "I don't know" and "The evidence is inconclusive" answers. And those answers are likely to only generate more distrust and, sometimes, hate.

A cycle of name-calling and distrust is spiraling out of control in some Internet virtual spaces. People are deciding and declaring who is or isn't "authentic" and attacking others. The anger has shifted from attacks on researchers to attacks on parents, self-advocates, teachers, and even spouses in some instances.

It makes sense that I might avoid some people and groups because some members of those communities have been mean, even threatening, towards me. The Internet makes being rude and threatening easy. Maybe that isn't fair to every member of a group, but it is self-preservation to avoid groups I associate with mean-spirited behaviors. 

When someone tells a parent to please control "that retarded kid of yours" — sorry, but I am going to judge that behavior. I also have a right to fear such meanness online. But there is a subtler meanness online in autism forums. It's the meanness that calls some people "shining Aspies" or "inauthentic autistics." Then, these same angry people wonder why some self-advocates are angry and defensive. The self-advocates' anger doesn't help, and it can be a burning anger. Again, that's not all self-advocates — not even the majority — but it is enough that it feeds the cycle. 

I do fear what is happening online. I've been told in emails to blow my head off, that I should be killed, and my family has been insulted by some unthinking people. It is often obvious what the biases are of the writers of these emails and posts. Then, I catch myself developing my own deep biases against people and the groups to which they belong.

As I wrote last week, this isn't a unique situation. Autism communities are no more (or less) dysfunctional than other communities. But, when you have a group inherently struggling to communicate and to understand other people, the cycle is much harder to stop.

Saturday, August 13, 2011

Writing About Autism: Not for the Autistic??

An interesting, and disheartening, conversation:

Writing About Autism: Not for the Autistic??

The thread on About.com represents what many of us know about the autism "community" and its coherence: there is no single community, and there is no coherence of purpose, ideals, or beliefs. Insults and attacks are the norm.

Now for the "good" news: this isn't really an "autism" issue at all. If you want proof, read the comments on any political, technical, medical, or even hobbyist website. The vitriol and hatred seems to be universal, not an autism issue.

You want anger? Discuss Windows vs. Linux vs. OS X. Mention your great experience with a Chevy truck on a Ford enthusiast forum. I believe that debate has raged since the 1940s. Even "IRL" (in real life) people attack and insult over silly things. I had someone say, out of the blue, "You drive a Jeep? Really? How can you own such a thing?" I can't recall why it was mentioned — I was simply parking to shop at Target.

What is it with people? From where and why has all this impoliteness appeared in daily life?

We don't merely disagree with people, we allow ourselves to "hate" and "despise" people with different views, values, or beliefs. We can't accept that different views might be honest differences of both opinion and experience.

I do dislike charlatans taking advantage of families and there are men and women I do believe are dishonorable. But not most. I might not agree with a parent's choices, but I do not hate the parent. In fact, I try to understand why the parent is desperate and how desperation, guilt, and misinformation mix to lead to certain choices. The right approach is to explain my views, not insult and yell (virtually or in person).

The "self-advocacy" movement has to be careful. Many adults and teens with ASDs have had challenging experiences and carry with them some anger and bitterness. They need to explain that carefully to the broader autism communities. Not everyone understands how being treated horribly by others can result in a defensive, argumentative stance. Trust me, I understand being angry at institutions and people — but anger doesn't always produce the desired results.

And I tire of some parents and advocates telling me the obvious: I don't understand their lives. No, I don't, but I understand that your anger and vitriol is also harmful, especially when you attack adults and teens with ASDs trying to stand up and explain their experiences.

If you don't like what I write or what anyone else writes online, you can stop reading my blog along with any other websites with which you disagree. What is so difficult about moving on and reading something else? Or, if you are mature and thoughtful, you can read the sites with which you disagree to learn about and appreciate the views expressed. You don't need to post a reply or comment to sites you dislike; you can simply read and observe.

I don't read many blogs or forums. I don't have the time or energy for most of them. I read Stuart Duncan's blog from time to time, but generally I only stumble upon other sites when I see something interesting on Facebook or Google+ that seems worthy of reading. There was a time I read three or four blogs a week, but I don't have the energy for all the anger anymore.

As I mentioned, this isn't merely an autism issue. I no longer read the comments on most news websites, technical sites, or hobby sites. I read the main posts or the news headlines and that's it. One reason I like reading using my iPod Touch is that many sites don't include comments on the mobile devices. No comments means no anger, no hatred.

At least we can't blame "autism" for the lousy attitudes of the online community. "Flame wars" are not only as old as the Internet, but as old as human communication. I can do my best to be polite and not use silly insulting names for groups or people, but even honest disagreements have a way of deteriorating quickly.

Try to be polite. We will all fall short at times, but at least make the effort to listen and consider other views. If you do disagree, try to be nice about it while expressing your viewpoint. That's the least we can do.

Friday, August 12, 2011

AHEADD, Autism, and Higher Ed Supports

A week ago I travelled into Pittsburgh, PA, to meet with Heather and Paula from AHEADD, an organization that provides additional supports beyond what colleges and universities offer to students with cognitive differences. These were impressive and energetic women dedicated to working with students. Heather earned an MSW from the University of Pittsburgh and Paula has an M.Ed from Ohio University. The sad reality is that many of our colleges and universities do not have such qualified people working with students with ASDs, ADD/ADHD or other neurological challenges.

AHEADD was founded because even great universities cannot meet the perceived needs of some students:
Carolyn Komich Hare founded AHEADD in 2002, when she piloted the program in response to a parent's inquiry regarding the availability of specialized support for her daughter, a student with Asperger's Syndrome who would be returning to Carnegie Mellon University following a year's leave. 
AHEADD Provides:
Coaching, Mentoring & Personal Advocacy for College Students with:
  • Asperger's Syndrome
  • Attention Deficit Disorder (ADD)
  • High-Functioning Autism
  • Dyslexia
  • Learning Disabilities
  • Non-Verbal Learning Disability (NVLD)
Understand that there are not many students in higher education in need of intensive supports. Realistically, we cannot expect universities to meet the needs of every student, though that might be the ideal. People don't always realize it, but even federal law recognizes that the costs to support a student with special needs must be "reasonable" (and that's not defined in the law) based on the institution, its access to support experts, and its financial resources. Yes, a university can use "We cannot afford to provide supports" as a legal defense in some cases. They have to make a "best effort" but courts get to decide what is a good effort to support a student.

That lack of qualified and intensive supports is why I was interested in learning about AHEADD, which is the leading independent provider of supports in Western PA. As I have written in the past, institutions of higher education are facing budget cuts that often affect disability services (DS), faculty training, and other supports for students with special needs. Many institutions, including ones I have toured in a few states, have created "Residential ASD" programs. However, colleges charge extra for these programs. In some cases, the additional charges are equal to or greater than the fees charged by CLE, AHEADD, and other private fee-for-service organizations.

I now teach at a small private university in PA. Our disability support director is also an instructor in the Dept. of English and the School of Education. Like many faculty at smaller schools, she must "wear many hats." At the large R1 I attended for my doctorate, the situation is not "better" for students, as the DS office has faced cuts and increased case loads for DS advisers. Whether the campus has 3000 students or 50,000, it seems that DS is an obligation they struggle to provide.

Most parents and students I meet don't realize how challenging the higher education setting is, especially in an era of cuts and consolidation within institutions. Colleges and universities are ending degree programs, closing smaller "schools" within universities, and trimming anything deemed "extra" by administrators, donors, and state officials.

If a student needs extra supports, this means private organizations might be the best option. Allow me to provide some information directly from the AHEADD website:

Mission - Individualized and Ongoing Support
Currently, accommodations in higher education lack consideration of characteristics that affect the ability of certain students to achieve their potential. While college accommodation plans provide excellent in-class assistance, students with Learning Disabilities, ASDs, AS, NVLD, and ADD require far more comprehensive, individualized, and ongoing support to address difficulties in the areas of organization, social skills, and communication. 
AHEADD's mission is to establish and maintain best practices which fill this void in a manner that respects students as adults, complements the traditional college accommodations plan, and maximizes use of existing campus resources. 
As AHEADD grows to meet the needs of a growing number of students across the country, it will continue to set the standard for exemplary support of exceptional students. We also intend to provide this support in consideration of families' financial burden. AHEADD currently charges a fee of $4200 - $5300 per student, per semester.

The students I've met in Pennsylvania often pay $18,000 or more annually to attend state universities. Private universities can cost more. In Minnesota, my students often paid more than $14,000 in tuition, fees, and other expenses to attend a state university. I cannot imagine the "sticker shock" when a parent learns supports for a student might add $40,000 or more to the cost of an undergraduate education. I understand why many question the value of the investment. However, I also remind parents that supports developed by a program such as AHEADD might allow the student to receive less supports over time. To attend social skills groups, for example, might cost only a few hundred dollars instead of thousands.
AHEADD, CLE, and similar groups provide supports that address no only academic issues, but also the important social and life skills students with special needs will require for success and independence.
The AHEADD Model of Support Involves Four Core Elements:
1. AHEADD Professional Staff Involvement
2. Development of Campus and Community Support Network
3. Utilization of Campus Resources
4. Peer Mentoring
I am not recommending AHEADD, CLE, or any program in particular. What I want students and parents to understand is that our institutions simply do not provide more than the basics required by federal and state regulations. We don't have the resources to provide the best possible supports. Sometimes we do provide enough for students succeed, but I have also met many young men and women who did not complete college or university educations. Some of the students I've met have enrolled in three, four, or even eight different institutions. I personally attempted to complete graduate school at least four times before finding the right mentors and a good environment for me needs.

I did meet with educational psychologists, neurologists, and other specialists along this journey. Such supports are not cheap. They are also emotionally demanding because it is easy to question your own abilities and self-worth when you need help. Being "smart" is not enough to succeed in college or in life. You also need interpersonal skills and social connections to succeed in life.

Without my wife and my family, I could not have completed my master's or doctoral programs. I also needed the help of an educational expert. If you are interested in the team that helped me deal with the university experience, they can be contacted at:
Lisa King, M.Ed.
Co-director, Higher Education and Autism Spectrum Disorders, Inc.
Lisa King and her colleagues generally work with colleges and universities to meet the needs of students with ASDs. I do not know if they work with students and families individually, but they do have a book educators, parents, and students should read: Students with Asperger Syndrome: A Guide for College Personnel.

My meeting with AHEADD personnel does lead me to believe their services could help some students and families navigate the higher education experience. Heather informs me that AHEADD does work with families to reduce the out-of-pocket costs for AHEADD services and the organization is establishing scholarship programs. Some students also qualify for partial financial aid from state occupational therapy programs.

One reason I consistently recommend that families consider two-year community colleges and other options is to ease into the college experience. Students with special needs often do best when they start higher-education programs part-time, learning how to deal with professors and large institutions. I have also found that smaller colleges often provide more personalized supports, through unofficial mentoring. Simply having professors know you as an individual can be a big help when you have special needs. Larger institutions can be impersonal and inflexible.

I know high school juniors and seniors are already thinking ahead to college. If you have special needs, you also need to plan for ways to address those.

Wednesday, August 10, 2011

Settings and Sensory Overload

The last few weeks have been stressful, dealing with moving, a new job, two pet cats with issues, and all the little complications along the way. Yet, with what is probably more actual stress than I was experiencing only a few months ago, I tend to feel much better about where I am and where we are going as a family.

Why do I feel better?

My simple answer is because I'm not in an urban setting. The most extreme anxiety I've experienced in PA was not when the basement flooded. It was not even waiting to see how JC did during cancer surgery. It was while driving in Pittsburgh. I hated the drive — intensely. I disliked downtown even more than the driving.

Don't misunderstand, I was plenty worried about J.C. Kitty during his surgery exactly a week ago. It was a lousy feeling to be wondering if I should be with him at the vet hospital, just in case something happened. But it wasn't the sort of stress that causes me to freeze and hide away. In fact, I wanted to do whatever I could for J.C.

But, sitting in traffic on Liberty in downtown Pittsburgh? I wanted to scream. I wanted to stop the car, get out, and run away to anywhere else. I felt claustrophobic; I was trapped and it seemed as though the buildings had me surrounded.

Pittsburgh is actually worse than Minneapolis. It's an older city, a city that wasn't planned or organized. I dislike the disorder. The crowded, random, messy city is overwhelming.

I can't explain it to someone who hasn't lived or worked in West, but L.A. is organized. Phoenix is organized. Heck, I found my own way around Dallas and its suburbs without any problem. I actually loved Dallas. It was so easy to navigate that I felt relaxed, even in traffic.

There's something different about Pittsburgh or Minneapolis. I'm sure I'd collapse in cities like Boston or New York.

It's hard to explain, but I love Los Angeles. I also can't live there and be healthy. I get exhausted by the sounds, the smells, the general noise and hubbub of cities. Sirens, large diesel engines, exhaust smells, and all the rest are too much for me after a few hours. When I went to school in Los Angeles, I escaped often by driving to the beach or to the local mountains. I needed to get out of the city to decompress. I was out of the city almost every weekend. Not one or two weekends a month, but every weekend.

Our new home is quiet. It is calming. It reminds me of the places I would seek out when I had to decompress years ago. It is like the foothills of California.

Maybe I've found home. That would be nice. It will be even more like home when we all here, together. Then, I'll be even more at ease.

Moving Stinks, Ask Our Cats

I wouldn't claim that the move to another state has gone smoothly for me or my wife, but it seems to have truly upset the cats more. We worried about that possibility before the move because Pumpkin and Muttley are anxious felines with stressed-out personalities. Pumpkin Kitty (aka PK) is on Prozac and the vet suggested Xanax today. He's not eating well, hiding, and hasn't been in my lap once since the move.

Muttley ate tonight, which was nice, but he still wanders about screaming at the top of his little lungs. He used to cry in the old house, too, especially after Momma went to work each morning. He would be anxious around 4 p.m. when she was due home within the hour. Now, he cries and she doesn't arrive.

J.C. was diagnosed with cancer the day Momma had to return to her job in another state. He had surgery the next day and seems to be doing well, all things considered. He is eating a little and drinking water. I'm sure his tough time isn't helping PK or Muttley. J.C. smells a little different after the surgery, which the vet says is normal because he isn't eating as much or drinking enough water. By next week, J.C. might be closer to normal.

Our kids are more important to me than any of the house issues — and there have been several serious issues during this move. We have some issues that are significant, but a house is not our kids. A house can be repaired, minor things fixed over time, and any paperwork issues are easy enough to address in time. I don't care as much about the house as I do our feline family members.

My work is suffering because I worry about the cats. I can't focus right now on my new job or any current projects. That's starting to worry me with deadlines approaching.

Momma will be here this weekend. I'm hoping that helps the kids reset so they can be calm for a few days.

I really miss my wife, too. She keeps the cats and me calmer.

Tuesday, August 2, 2011

Thoughts on Back to School

When I was young, I disliked summer because it wasn't as routine as the school year. I dislike school much of the time, too, but it was a (somewhat) predictable setting. Best of all, school meant books with facts and more information to learn. Since becoming a more active special education advocate, I've met many children and adults who love memorizing specific facts but don't (or didn't) enjoy their classroom experiences.

How can you make back to school less stressful? What are some suggestions to ease the annual ritual?

I begin each year with a tour of my campus. In college, I always arrived early and walked around the campus. I did this year after year, because I needed to ease myself into the campus routines. I even did this in high school, walking about the empty campus before it was crowded with unruly students. I've meandered about the campus where I am now a professor and will visit several more times before the first day of classes.

It might help other students to explore campus, with a parent or guardian, before classes begin. I'd recommend this for students from elementary school to university graduate students. The familiar is less stressful.

Next, I would contact any teachers or instructors available and willing to discuss the semester or year ahead. I would ask that parents do this for K12 students; some states and schools discourage direct correspondence with students. (It's actually illegal in at least one state to "friend" a student via social networks!) For university students, the best approach is to contact instructors with the assistance of the disability services office.

In the K12 setting, families need to be thinking about revised Individualized Education Programs (IEPs) from the end of one school year to the beginning of the next. I recommend a list of what has been accomplished, which goals were not met / mastered, and which issues are immediate concerns for the student's success. Knowing which goals were not met can help a teacher plan for the coming year — and you should never think of these as "failures." If a teacher doesn't anticipate both strengths and weaknesses, the teacher can't help the student stay on track.

Food can be a struggle with any young student, and I'm picky about food as an adult. Allergies complicate this for some families, as well as any special diets. K12 districts and university dining services can provide sample menus. K12 districts are required to make accommodations for safety and reasonable health concerns. Higher education institutions do not make the same allowances, though most now offer vegetarian menus and other special dietary menus. Most colleges and universities have "food courts" similar to those in shopping malls. If I do eat on campus, I stick to what I know is okay.

It might not be logical, but I insist on the same notebooks, mechanical pencils, and ink pens year after year. I do not like other brands and losing my favorite mechanical pencils causes anxiety. Maybe your student also has preferences for specific school supplies. Brands of crayons and pencils are not the same. Don't be surprised if a student insists on his or her favorites. Instructors should be tolerant of such preferences. Why does it matter if a student wants black ink instead of blue or likes college-ruled bright white notebooks?

I use wall calendars and charts to help plan for school and throughout the school year. I need lots of charts, because I think visually. Having the plans for the year ahead on the wall weeks in advance is a good way to ease into the school year, too. I've been looking at the academic calendar for 2011-12 since June. Yes, that's obsessive, but I hate surprises. Knowing the future plans helps keep me relaxed.

During the school year, I have printed calendars in every binder. I keep a single "master calendar" so I don't mixup dates or schedule two events for the same day. Calendars are essential to my functioning well. I never put the work related to two courses in one binder — I keep every topic separate, and the master calendar is in its own portfolio.

The calendar I keep is printed from iCal on my home computer. Any time I change the calendar, I print the new version and replace the old in my master binder. Yes, that's a lot of work, but I need that planning. When I talk to parents and students, I hear a similar desire for order and routines.

School seldom goes smoothly, so the single best thing a family can do is let the student in their lives know there is a place to find support. Knowing my parents were there for me, no matter how lousy the school day, was one of things that made it possible to succeed.

Families of special needs children know that every single day at school is a step forward, but not an easy step. Preparing for school lasts from one year to the next. During the school year, you have to keep in contact with schools as much as possible.

At the university level, your student will be on his or her own. Privacy laws that recognize adulthood can prevent a parent or guardian from working with instructors — unless the student files a written consent for the parent to be involved in disability services. Preparing for adulthood and self-advocacy has to begin during the K12 years.

To be a self-advocate, students should be involved in IEP meetings and back-to-school planning. Family members and teachers need to listen to the student and help him or her develop a sense of control. It is important for students with special needs to be as active in their own futures as possible.

Back-to-school means another year of changes. It should also be another year preparing for adulthood.

Monday, August 1, 2011

Higher Education and Supports for Autistic Students

Based on comments several months ago to this blog, I spent a few "extra" hours this summer contacting college and university offices that serve students with special needs. The names of these offices vary, from Disability Services to Disabled Student Support, but regardless of what an institutions calls "Disability Services" it was easy to locate and contact the directors, managers, or coordinators of these programs. A few heads of DS also carry the title "professor" and teach within academic departments in addition to their other duties.

My motivation was personal, since I research students with ASDs and higher education. The more I know about students receiving supports, the better. But, it turns out that as my doctoral study data suggests, not many students with ASDs have sought disability supports.

Most of the leaders of these programs have worked in disability services for many years. For example, the director of the Resource Office on Disabilities at Yale University has worked in disability services for nearly a dozen years. The employees I corresponded within the California State University system (CSU) each had more than ten years of experience in student supports. I sent questions to CalTech, a couple of University of California campuses, the University of Southern California, Carnegie Mellon, and Robert Morris University, where I am employed. I have personal experience with the DS services at CSU Fresno, the University of Minnesota, and Robert Morris. I've also worked with staff and faculty at institutions in Texas, Florida, and Arizona.

The questions I asked were limited to autism spectrum disorders. Roughly, the questions were:

1) What documentation is required to apply for and/or receive supports?

2) Do you have any students with ASD diagnoses currently receiving supports, or have you had such students in the past?

3) What services are typically provided to students with ASDs?

4) Is there any training for faculty and staff related to students with ASDs?

The first question was consistently answered with an important qualifier for parents and student. Not one university or college accepted "educational diagnoses" offered in some states by school psychologists or other school employees. Self-diagnoses are never accepted when seeking supports. Every institution requires a recent (which varied from 18 months to four years) assessment by a clinical psychologist, psychiatrist, neurologist, or medical doctor. If the assessment was by any licensed health care professional, it was considered valid. A CSU support expert explained that the university where he works accepts any clinician's diagnoses because that is the easiest, safest, legal approach to compliance with ADA and Section 504/508.

In all but two cases, only a letter from a licensed clinician was required. The other two did not elaborate. These were state universities in two different states and might have other paperwork requirements, but I do not know and cannot state with any certainty what they require.

The second question was more surprising. Yale's director of DS indicated only a few students in the last decade had requested supports related to an ASD. Several university DS experts replied that they had never been asked to develop a support plan for a student with an ASD. That was surprising to me, but I discovered only one university support person, at a Midwest state university, could recall working with more than four students diagnosed with ASDs.

From CalTech to Yale, the DS experts said they welcomed students with any diagnosed special needs, but that students simply don't seem to seek out supports. Maybe this is particularly true of ASDs?

It does turn out that UCLA has (or had?) an active Autistic Self-Advocacy Network (ASAN) chapter. This group has hosted events on campus and seeks to improve awareness of ASDs. Autistic students run the organization, which is not associated with the DS offices at UCLA.

I received only vague answers to the third question, which is to be expected. Every student with special needs is different and there are no "typical" services for students with ASDs.

Finally, most campuses did not provide training to faculty. Some encouraged staff and faculty to attend local conferences or events. Until there are more students with ASDs in higher education seeking institutional supports, the DS offices must focus on other special needs.

Carnegie Mellon referred me to AHEADD and the Cal State campuses in the S.F. Bay Area referred me to CLE for additional information on supports for students with ASDs.

AHEADD's website reads:
AHEADD (Achieving in Higher Education with Autism/Developmental Disabilities) is a private, community organization that provides support for students in higher education with:
  • Learning Disabilities
  • High-Functioning Autism (HFA)
  • Asperger's Syndrome (AS)
  • Non-Verbal Learning Disorder (NVLD)
  • Attention Deficit Disorder (ADD)
Originally developed in cooperation with Equal Opportunity Services of Carnegie Mellon University, AHEADD is specifically designed to address students' inherent social, communication, and organizational issues, and helps students develop individualized strategies to manage their college careers independently.
CLE, with offices nationally, provides the following information:
Finding the right college program for students with autism spectrum disorders, Asperger's, nonverbal learning disorder, ADD/ADHD and other learning disabilities is vital for a college student's transition into independent adulthood. The right program should provide support for each student's unique needs and goals. 
With the help of College Living Experience (CLE), young adults with learning disabilities are experiencing independence as college students. College Living Experience helps special needs students attend universities, community colleges, and technical and vocational schools near one of the five CLE locations across the country.

I've met with CLE representatives and must admit that the costs concern me. The CLE centers are in Austin, Costa Mesa, Ft. Lauderdale, Denver, Monterey, and Washington, D.C. The locations serve students at multiple colleges and universities. For example, the Costa Mesa center supports students at several community colleges, CSU Long Beach, CSU Fullerton, and UC Irvine.

Both AHEADD and CLE have a limited number of service centers. These centers do work with colleges and universities to provide supports for students with ASDs. I am meeting with AHEADD representatives later this week to learn more about their programs. I have noticed there are AHEADD programs at California State University, Bakersfield. I did not expect to find an autism support center at CSUB, but that's a great thing to know as a Central Valley native.

I'll write about AHEADD after I meet with their support experts this week. This is strictly my initial impression, but it seems that private organizations are working more directly with autistic students.

I'm unable to explain why universities might not be encountering more students seeking supports. Maybe parents and students will offer insights in coming months.