A few days ago, I dreamed Nat could speak– I mean, really talk, not just the hesitant monosyllabic speech he uses. In the dream, I was riding in an elevator with Nat and a pretty blonde woman, in her early forties. She sees him, 23 years old and sucking his thumb, but doesn’t realize he is intellectually disabled. She says flirtatiously, “You must be a movie star to be doing that in public like that.”
I answer for him, as I always do, brusquely defensive and self-righteous: “Actually, he is autistic.” But then – Nat takes out his thumb and says, nonchalantly, as if he could talk all along: “Actually I do come from a long line of theater people.”
I awoke gradually, uncertain that this was a dream, but each moment of dawning clarity brought more pain. It wasn’t just Nat’s talking that blew me away, it was the level of self-awareness and subtlety. I hadn’t realized, after all these years, that I still wanted that so desperately. I think this flicker of desire must have come from a recent decision his doctor had made, to reduce Nat’s medication. I had agreed that we should try this, because Nat has been doing so well for so long. We reduced his meds around a year ago and found that even though he seemed more on edge, he also seemed to be able to answer us more often. And anyway, the goal had never been to have him medicated forever; it was just supposed to have been a “buffer” against aggression that started 13 years ago. I can never forget that horrible afternoon when he was 10 and he attacked me in the subway station, simply because we were going a different way home. I struggled to fend off his clawing hands while keeping hold of his baby brother and the stroller at the same time. I was desperate to calm him, to soothe him. Events like that became common, so we turned to serious neuroleptic medication to help him.
While the decision to medicate made sense back then, I have learned over time that so much of parenting Nat has been about a kind of letting go, of hanging back to see what could happen. After all, we learned how well he could ride a bike because we (accidentally) let him ride off around the block, out of our view. In a mixture of choking fear for what might happen, and a small soft certainty that he’d be okay, we ran after him, knowing we could not overtake him. We had to wait, hearts in our mouths, for his safe return around the corner. We didn’t really know for certain he could do it safely – and yet, didn’t we? Somehow, it was okay. He came barreling down the hill towards us with a devious smile that seemed to say, “I told you so.”
Taking Nat off his meds is a slower danger than a bike accident, but almost as much is at stake. Nat is living away from us, in a house with roommates and staff, taking care of himself in so many ways. He routinely makes meals, cleans, and decides how to spend his leisure time. He plays on a basketball team, and he works three days a week at a supermarket. I do not want to see this jeopardized by a return to outbursts and aggressive behavior. He could stand to lose so much. I dread the phone call from his day program or from the house staff, like what I used to get during his middle school days: “There’s been an incident…” It’s been peaceful for so long.
The fact is, though, that a less sedate Nat could mean a more alive Nat — alive in every sense of the word. He will likely feel more anxious simply because he will be more aware. He will experience noise and sensation more acutely. And yet, with some of that comforting haze lifted, he may see things more clearly. He might understand more. Isn’t it his right, as a human being, to take this chance?
I guess, in this season of audacious hope, I feel my own sort of optimism: that maybe Nat at 23 can indeed handle a new, raw but heightened perception. Maybe with greater perception will come better communication, a stronger connection to the world, and all that it brings – delightful or frightening. Because parents will do anything to help their children grow. Mine is a mother’s dearest hope; I have a mother’s dream.
Chairman of Special Olympics Tim Shriver’s eloquent and forceful take on what “We the People” can mean for our country and perhaps the world. Read it here.
The top of the roller coaster.
A little danger stops my breath. Lifts my blood. My head floats near my neck. Legs orbit endlessly around their pedal planets. Highest gear feels like lowest. The world turns upside down. The best of childhood, like jumping off a swing at the scary point.
It varies me daily though always the same. Yesterday: burning lungs, smooth muscles. Today: short gulps of breath, burning pull of thigh.
Why? Still, if I stare only at the ground, submitting to my tire’s steady insistent seduction, if I remain mesmerized by my struggle, I don’t see what’s left ahead.
Now, I am there, searing pain that I have anticipated in almost sexual certainty; it explodes in my throat, a supernova of satisfying pain, glorious but now dying down so quickly. I listen for it to give way to vast open air. The harshness softens and I breathe.
Soon, soon, the heart wakes up after its brief post coital sleep and relinquishes my blood. The red blanket covers me, calms my lungs with a mother’s hands and I am warm.
At last, in balance.
Today, while getting a root canal, I had a lot of time to think. A friend had told me to listen to music while it was going on, and so I brought my tunes along. I knew that would be risky because I am susceptible to music mush, where I hear a song and it takes me right back to a memory, kneading my heart like bread dough. But I have never been one to avoid certain emotional swamps, and so I went, because it would be better than watching bits of my tooth dust fly out of my mouth.
I say I am an emotion explorer, but that is actually not always true. Sometimes I avoid like crazy, so much so that I turn to stupid destructive behaviors and make them the problem, just so that I don’t have to sit with a bad feeling. An example we can all relate to: eating junk food. And that’s just the start of it, that’s the vice I can admit to. See, people think they know me because I write right from my gut but the fact is they don’t. There is so much inside me that I don’t even know because I can’t deal with it.
Lately I have not been able to write at all. One big expository kidney stone. So I decided now that the only way to relieve this is to just start typing. I have been having a very hard time since September. And while yes I do suffer from depression and also the opposite, I feel that this terrible sadness that has plagued me on and off, mostly on, since the fall is about change. Nat is in his house, Max is back at college, and Ben is at the high school. The three of them are flying. They are launched. I am that familiar cliche: emptying nester. I’m a mother most of the time without children, children I’ve been plugged into, umbilically almost, for 23 years.
Roll that tape back a few sentences. Let’s not skip over all three boys like some kind of long-memorized rosary prayer. Each of those beads is a world unto itself. I’ve shone so much light on that first bead, that gem, that diamond in the rough. My Nat. But this fall, it is the second bead that is sticking in my windpipe. Max is back at college. That is where my feelings alight, like scary bats at twilight who finally find some filthy hole to dive into. Max. I wasn’t sure until I was in that dentist chair today, and on came Sugar Mountain. You know, you can’t be 20 on Sugar Mountain. And even though Max is 20 and no longer on Sugar Mountain, he’s in Greenwich Village in New York City studying film, and that’s pretty close to being in an amusement park.
I miss him so much I can barely even mouth it. But I can type it. I remember once when we watched a baby film of Ben, Max said to Ned, “I didn’t hug him enough.” That’s exactly the feeling I have now about Max. I didn’t everything enough. I still don’t. When he’s here, I want to do and say so much but I don’t know what. I want to hold him, but it’s not like holding that fat little baby, of course. It is a bony, muscular man who is a head taller than me, so it isn’t quite the same. He gives a quiet little chuckle whenever I lean in to kiss him. Why does he do that? Is he uncomfortable? I guess. It’s always been that I don’t want to overwhelm Max with all my emotion because — I don’t know why.
So I sit there looking at him and smiling because my mouth just does that when he’s around. He walks into the room, and there seems to be a big general exhale going on. Everyone is relieved. We all know we will feel good now. He brings with him his laptop, so we hear his music. Never obnoxious stuff that has to prove something. Sometimes whiny female stuff, sometimes ugly White Stripes cacophony. But mostly, feathery guitars and interesting lyrics. Light yellow stuff that makes you feel like everything is okay. That’s Max.
I know he wasn’t put here on this earth to make us all feel alright. It just happens. He’s not always happy, and when he’s not, he finds his way to me. He’ll surprise me, in the middle of a gulp of coffee, with some big raw cut in his young fleshy life, and I will drop everything, do anything to heal it. Out of nowhere, out of the deepest parts of myself, comes this clarity — for him. Things I just know. Ideas I have for him of how to look at it, what he might try. It’s alright. I make him feel alright. Every now and then, I can give him his own gift, and it lifts me like a balloon, softly into a light blue sky.
I received this internship posting today, and I was reminded of what my grandma used to say about my brief visits to her down in Florida: “It’s only a crumb, but I’ll take it.”
First of all, let me say that the Lurie Center, who offers this posting, is an excellent, forward-thinking bastion of autism knowledge, compassion, support, training, and all the things we families with ASD look for. But the fact of this offering got me thinking about portions and crumbs, and having a seat at the table.
JOB INTERNSHIP PROGRAM for young adults ages 18-30 on the AUTISM SPECTRUM offered at the Massachusetts General Hospital’s Aspire Program.
Internships are at established companies in the Boston area.*****9-week or 17-week placements with pre-internship preparation*****
This is an opportunity to refer students or graduates with Asperger’s syndrome and related challenges: The program’s goals are to:
* Offer interns work that is interesting and useful, where they apply job related skills that will help them to be prepared for future employment.
* Help participants learn the social aspects or “soft skills” needed to succeed in the workplace.
* Provide a Job Coach for on-site support and weekly off-site training and peer meetings to ensure interns have a successful experience.
First internships starting at the end of January. Sites are at established companies in the Boston area including three placements at Mass General Hospital’s finance and facilities management depts.
So I deduced from the careful, thoughtful layout of the opportunity described that it is a rare enough kind of thing that an autism organization attached to a major research hospital has to offer it. But opportunities like this one should be common, should be offered everywhere! For example, isn’t every employer required to accommodate in the manner described above, if prospective employees need such training? If we have to build ramps, shouldn’t we also be building in Job Coaches and soft-skill training?
It reminds me of the finishing schools around here that some autism families have to send their graduated kids to (for big bucks) because the school system did not train them adequately, or simply ended too soon for them to acquire the skills they needed. Why do autism and ID families just accept this kind of educational approach? Shouldn’t the school system be required to job-train and independence-train (sorry about the syntax). Shouldn’t that family instead be allowed to take their IDEA funding elsewhere, say to a community college who offers the education they need?
My question is this: is it really so complicated to job train people with Intellectual Disabilities and ASD? Okay, maybe someone with a history of aggression; but ask Peter Gerhardt about how he has worked with many, many aggressive people on the Spectrum and guess what? They ended up learning how to work. For every person, there is likely a job out there that they can do. Every person. For a good analogy, look at Special Olympics. They take any guy with an Intellectual Disability and they get him/her a sport. In Nat’s case, they taught him three sports. They just do it, withNikes or whatever. Volunteer coaches, and rarely do they even have one-to-ones. It’s not rocket science, it is human relating.
Or ask the organization I work for, the Community College Consortium for Autism and Intellectual Disabilities, (CCCAID) about their community college programs that not only job-train, soft-skill train, but also independence-train, and the businesses themselves pay, and the students often end up working at these places after they graduate. At least, that is the plan. CCCAID has a partnership with Thompson Hospitality now which will provide a certification, a bona-fide working experience while its students with ASD and IDs are in their community college programs, and these students will have certificates that were vetted by the industry employers themselves. You’d come out of the program being able to do exactly what Thompson Hospitality Corporation wants its employees to do. Now that is what I call an opportunity. Especially because you are training people to do work that you need. It is not an act of charity. It is a business arrangement.
We shouldn’t be made to feel like Oliver when we ask for more. We are not biting the hand that feeds us. We — families of those with Intellectual Disabilities ASD and potential employees with Intellectual Disabilties and ASD — should be demanding accommodations in the workplace. A place at the table. And I don’t mean the kids’ table.
Here is a workshop up in Danvers, Massachusetts that would really benefit families with disabilities. Jewish Family and Children Services is a branch of Combined Jewish Philanthropies, and they do excellent presentations, very pragmatic and down-to-earth. They also have day programs and they create housing all over the state. Betsy Closs, who is leading the workshop, is a dynamo, who knows everything about housing for our guys. They are limiting the workshop to 12 so RSVP quickly.
Even if you don’t go to the workshop, you should consider contacting them to learn about their many helpful programs.
Understanding Housing and Support Options for Adults with Disabilities
On Monday, February 11, 2013, Betsy Closs, MSW, Director of Services for People with Disabilities at Jewish Family and Children’s Service, will provide an introductory workshop titled Understanding Housing and Support Options for Adults with Disabilities.
This workshop will provide a basic overview of housing and residential services for adults with disabilities. Special attention will be paid to supported housing options for those who will not receive DDS funded residential services.
Where: JF&CS North Shore Office
175 Andover Street, Suite 203, Danvers
When: Monday, February 11
6:00 – 8:00 p.m.
There is no fee for this workshop, but an RSVP is required. Please call 781-647-JFCS (5327) x3004 to register. Space is limited to 12 participants.
I was talking to an autism mom the other day while our sons practiced on their Special Olympics basketball team, when I realized I had three other parents waiting to talk to me. Suddenly I’m a wise woman simply because my autistic son is now an adult. We have passed through the Inferno gate of Adult Services but unlike Dante’s, we have not abandoned hope.
But hope was in short supply that Saturday morning. Hot anxiety rose from these parents like steam from a kettle. They rifled through their bags and pockets for something to write on, to take down what I was saying. Every few sentences, one of them would stop me and say, “Wait, what does that mean?’ And every so often, they would stop writing, stare out at the crowded gym and say, “Oh, god, this is so overwhelming. I don’t even know what to do next.”
I could tell her what to do next: everything. Even though her son is around eight, she needed to be planning for his future: job, housing, caregivers. I don’t just mean creating a Special Needs Trust; I mean learning about all the adult services and resources that are available and how to access them.
Just speaking those words makes me go bleary and looking for my bed. But as many autism parents learn early, sleep is something you learn to do without. From the typical sleepless nights of infancy, to the more autism-related sleep disorders that so often develop, to the worry, if you have a child with autism, you think of sleep as a precious gift, not an entitlement.
So I knew these friends of mine would understand it when I told them that in adulthood, there is only one entitlement for our guys: Day Habilitation, also known as DayHab or what it often is, Adult Daycare. The other thing they needed to know is that all roads pretty much lead to Medicaid.
This means you need to know about DayHabs and you need to know about Medicaid. The following is my understanding of Medicaid and how it is used in Massachusetts. Take it with a grain of salt, some of the details are probably incorrect. But if you understand the overall gestalt of what I’m saying, you have mastered the first lesson in Autism Adulthood 101. For the second lesson, you will have to ask specific questions about what you’ve just learned, to adjust my errors, my take on it. So leave that for the second lesson and just learn the first today:
Medicaid dollars are used differently state by state, but by and large they provide services either directly, as in the case of DayHabs which bill to Medicaid as therapeutic programs, or indirectly, as in the case of waivers channeled through the state agencies. In Massachusetts, the waiver money is harder to get, because the state agencies are all competing with one another for this pot of money that goes to the Executive Office of Health and Human Services. Whereas with the DayHabs themselves, the funding is more directly accessed, from program to money source. So families have to choose a DayHab, but they don’t get to choose which office of EOHHS they are assigned to. And they don’t get any say in how much funding their child receives — if any.
We have to assume that getting funding is going to be a battle. For one thing, there is the increase in numbers: while Nat’s peer group with autism numbered 2 in 10,000 just a decade before him, the two decades after him have seen the number increase to around 1 in 100. So, as hard as it was for Nat to get his funding, it is going to be exponentially harder for the up-and-coming families because there are so many more kids in need! For another thing, the budget is tighter. Some in the Federal Government want to cut or reduce the Medicaid program, strained as it already is. This is largely conservative Republicans, who believe that we autism families, veterans, elderly, homeless families, mental health patients — can all do without. I am so worried about that. I don’t see how this would work. I think it means mostly that families would care for their adult children until they died. Then if they have not been able to find or fund caregivers, the adult child is handled by the state — which means costly institutionalizing. Or worse — living on the streets. But some people have had one experience with someone living off the government who didn’t deserve it and that’s enough to sour them on these programs.
Others, largely Democrats, want to raise revenue to keep Medicaid going. I don’t know if taxpayers who don’t understand the plight of the Medicaid-dependent will feel about that. “Take care of your own,” some say. We do. We try. See above, sleepless nights. Broken families, traumatized siblings, depleted bank accounts. (And don’t you accuse me of bad-mouthing people with autism. I am bad-mouthing the difficulty of doing right by them with so little guidance.)
There will have to be compromises on both sides in order to come out with anything the two agree on. And this means there will likely be less for families with autism.
So parents of younger kids have to figure out now what they can do (and can’t do). They have to plan, like we did, for the worst-case scenario of no funding, and of only some funding. They have to understand that they must advocate with the state agencies while realizing that is the tightest place to go. So just like in an IEP, you go in knowing what are your non-negotiables and what you can live without. Nat needed good caregivers so that was our non-negotiable. Then I would take on the DayHab. I would do what I could to make his days worthwhile, but I was determined that he have his own place to live, with roommates and oversight. I had already seen how he fell apart living here, and the toll it took on my family, Ben especially. I knew that we would not live forever, and I wanted him to be with roommates, and we with other families, to have some kind of net underneath him.
What can parents of non-adults with autism do right now?
1) Find out who your Department of Developmental Services liaison is and make them know you and your kid. Google the number, find out, call.
2) Go to ADDP.org and find DayHabs you want to visit. Get aquainted with what they are like.
3) Learn about Medicaid-funded programs like Adult Family Care (AFC)
4) Get your kid on Section 8 (subsidized housing) waiting lists.
5) Do what those parents did with me: find each other and exchange knowledge. Parents are pretty much the only ones out there who will be glad to help you.
6) Acknowledge that you are going to feel overwhelmed by even just one of these items. Feel it, but then dive in a little bit again.
Rinse and Repeat.
We all have to eat, so I figured I might as well make it fun. For Chanukah, Max had given me the Game of Thrones Cookbook: A Feast of Ice and Fire, and so far everything I’d made from it has been delicious. Our whole family loves the HBO series Game of Thrones, and Max and I have read all five of the George R.R. Martin books and loved them even more. In case you have been living somewhere far away, like across the Narrow Sea, you must know about the phenomenon that is Game of Thrones. It is a fantasy version of the Yorks vs. the Lancasters, set in fictitious Westeros. The loyal and true Starks and the scheming and fascinating Lannisters are great houses, as are the beautiful, powerful, and oft-mad Targaryens and the, well, the Martells. (The Martells are the Hufflepuffs of Westeros). Each of these houses and lesser families also intertwine in a tale of passion, intrigue, journeys, treachery, and growth.
At first, however, I did not quite understand why I liked GOT. Max raved about it and finally got us to watch it with him, in — of all places — his dorm room at NYU. There I was, lying next to Ned on Maxie’s bed with friends of his on the opposite bed, feeling like we were back in college, but better. When Max loves something/someone, he does it with his heart and soul. His loyalty is Stark-like and everlasting. He still has his Blue Blankie from his Day One. He cried when Ben lost his (Ben’s) favorite Superman toy. He loves the people in his life and truly shows up for them.
I think my GOT obsession is wrapped around my love of Max. I saw the story through his eyes, almost literally that first night in his room. And when I read the books, he would Instant Message with me from college to find out where I was in them and what I thought of what was happening in the story. When I finished Book V, we talked and talked about what it all meant, what was to come (there are two books still to be written), how did this relate to that, and so on. I never felt quite finished with these conversations; I wanted to talk and talk to him but I could not articulate the longing I was feeling.
Tonight, I realized that this was likely the last dinner we would have in a while as the original five of us. Max was going off on his adventures and then back to school pretty soon; Nat had his various social outings. Ben is here but he does not enjoy eating dinner that much — except tonight was different. I made a beef and bacon pie; the top was a bacon lattice which Max lovingly made. I baked two round loves of oatbread, and finished up with corn fritters drizzled in honey. This is an authentic meal from Winterfell, the North, the land of the Starks.
Max was with me, sauteing while I chopped and stirred. The smells of cooking filled the downstairs: the bakey smell of bread, the hot buttery smell of bacon, the bubbly brown of stewing meat. Nat flitted back and forth, watching what we were doing. At one time he seemed alarmed by the unusual combinations of food (steak bits and bacon, pie dough filled with meat, not apples) and he put his hands to his head and said, “Spaghetti. Pot.” I reassured him that he would like this dinner.
When the food was ready, I ran upstairs and put on an old midnight blue velvet dress I’d bought 20 years ago from Laura Ashley. I pinned up my hair and when I came down, Ben complimented me by calling me a total dork. “Welcome to nerddom, Mom,” he said. My heart swelled with pride because I could tell he approved. I motioned us all over to the table, which I had set for a Medieval-style feast, in Stark colors of white and gray. Ben made the Stark sigil of the wolf, and hung it in the window. We lit candles, and Nat said the Hebrew blessing for candles. Ned got out the music from Game of Thrones, which his brother CB had bought me for Christmas, and Ben pronounced it, “epic.”
We ate and ate. Everything went well together: the slightly sweet, oaty bread; the honey and corn fritters, the dense pie. Ned and I shared a goblet of wine (my sister Laura had bought the wonderful goblets for us years ago), and ate off of my grandmother’s china. I was swathed in velvet, surrounded by my grown-up sons, my handsome husband, the shining silver, swelling music, and hot delicious food. I think we all felt it, this crystalline moment in time, suspended in a different world, and yet, grounded by love, the simplest and most splendid of emotions.
The other day in my favorite bookstore, I came upon a paperback by Dr. Simon Baron-Cohen, The Science of Evil. I have not read the book, but in the New York Times Book Review in June of 2011, Katherine Bouton writes: “The Science of Evil, by Simon Baron-Cohen, seems likely to antagonize the victims of evil, the parents of children with autism spectrum disorder…” Baron-Cohen is in some ways the Bettelheim of the Modern Autism Era (1989-present) because he is the one who coined the term “MindBlindness” and developed the Theory of Mind. I believe that these concepts have likely done more harm than good, at least in the hearts of autism parents. I can’t speak for people on the Spectrum, but I assume that some of them don’t like it being said that autism = inablility to empathize. But this is essentially what Baron-Cohen believes and has researched. While I see how he came to those conclusions, I do not understand why he has not moved beyond them. His theory when applied to autism is flawed because he is attributing flat affect and perhaps communication errors and neurological mix-ups to an inner lack of empathy. In other words, just because someone with autism can appear not to care about or understand another person’s mind, doesn’t mean that is the truth.
I don’t believe that in autism, empathy itself is broken, as much as is the mechanism for interpreting social signals and cues. Nat, for example, may smile at a moment where smiling is basically wrong. That doesn’t mean he is sadistic. I believe it means that he doesn’t know not to smile. But he might be feeling the “correct” emotion. Smiling may mean something different to him than it does to me. Baron-Cohen and those who use the term Mindblindness are reading the autistic’s signals wrong.
In the wake of the violence in our nation of the last few years — the killing rampages in Columbine, West Virginia Tech, and Newtown — and the speculation about the diagnoses of the murderers (the media asked questions like: Did they have Asperger’s? Did this have any relation to the deadly behavior?) it is absolutely necessary for us to unhook autism spectrum from explanations of evil. And if people continue to believe that autistics have no emotions or empathy, then autism is going to be blamed for crimes that actually have nothing to with it.
My experience with autism spectrum is very different from the misconceptions in the media. People will still ask me if Nat has special brain powers. My guess is no, but he is particularly gifted in charming people. Just today, I had wandered upstairs to my room, where I was suddenly experiencing an awareness of depression, dripping all over me like cold rain. Nat was in my room, on my bed. I knew he’d leave because I had come in. That’s what he does. He doesn’t like to stay in a room with someone else, if he has previously been in there alone.
I was looking in the mirror, thinking, “why?” as I often do when I’m depressed, as if coming up with the reason will somehow make it go away. I heard Nat walking around near my room. He was near my door and I said, “Nat, I’m starting to feel really sad. I don’t know why.”
“Yes,” he said, and stopped his pacing. He paused a beat, and then he came quietly into my room, settling himself on the bed. He stayed a while, watching me in the mirror, looking intently at my expression, my tears, my eyes — with simple yet complete presence. And after what seemed to be a decent amount of time, he left. But for the rest of the day, I could still feel him with me.
New Year’s Rezzies:
1) Stop doing that bad thing
2) Start that hard thing
3) Decide to become that other thing
4) Work on that dream thing
–Susan Senator 12/31/12
I met a person the other day who was absolutely certain that Inclusion of people with significant intellectual disabilities in typical college classrooms was the best way to go. “No one should be ‘special,’” he said. “Separate is never equal.”
“Inclusion” is one of those words that you just can’t argue with. Except that in some instances, I can. The very fact that you are not allowed to doubt its universal benefit is what makes me squeamish. Sometimes it even feels to me like inclusion is kind of lordly, where the Includer can feel magnanimous because they have invited others in.
Inclusion, however, has been the watchword of the faith of the disability movement, and rightfully so. Because of inclusion, we have helpful laws, accommodations, and understanding. We have bridged certain chasms and brought whole groups of the population out from hiding. Inclusion has brought difference into the pack and made it less so.
But no, that last thing is not quite true. First of all, we do have differences from one another. People with disabilities have disabilities, and nothing but cures take them away. Some disabilities you don’t see; others you do. Why should the goal be not to see disability? Only when seeing it is getting in the way of fair treatment and respect.
I think inclusion can only go so far. Inclusion is part of the solution, but not all of it. Inclusion is the first step, to right a wrong (exclusion). Inclusion should go without saying; institutions should never be able to turn people away based on color, race, religion, disability, gender, sexual orientation…
But when inclusion is the end goal, I think it may be a weak gesture, especially when it comes to including people with deep autism and intellectual disabilities (ID). For me, the clearest example of this is in education. And here is where many disability activists will disagree with me. But I think that it is not enough to have people with significant disabilities in typical school classrooms, if the classroom is not set up for them to learn, or if the teacher is not trained in autism or ID approaches and strategies.
Disability activists will argue that there must be only one standard, that the same expectations should apply to all. That if we have separate offerings, targeted programs, certain requirements removed, we may be guilty of the soft bigotry of low expectations.
I understand where they are coming from: that long era in history where people with disabilities were relegated to attics, basement classrooms, institutions. Where society started every sentence about the disabled with “They can’t” and everyone stared and felt sorry for them. We never ever want to return to those days. We need our laws, our ADA, our IDEA, our inclusive standard.
But we have to move to the next step and consider the individual. Each person has his own particular needs and challenges, and it should be okay that some don’t follow the inclusive track. Nat did not. Nat went to a private autism school, with very small classes and staff ratio of 1:2, something like that. In a regular classroom in the public school, Nat did not learn because there was not enough focus on him. He needed his lessons and tasks presented in a very systematic, routine way without a lot of distraction and changes. The inclusive classroom could not provide him with that, nor did the teachers have the training in the techniques that worked best with Nat. I am thankful that my town sent Nat to the May Center for most of his school years, because of the tiny classes and the emphasis on direct teaching, repetition, structure. And by the way, no energy or resources needed to be devoted to anti-bullying.
Nat’s typical peers missed out on him, and he, them. Nat was sheltered, not exposed to so many “normal” things. Even his sports were Special. He did have a prom, though. Anyway, we could not sacrifice the curriculum and techniques Nat needed to learn, just so that he could sit with typically developing peers. Sure, they would have gotten a lot out of him. He is very good at inspiring people and teaching us about a whole other way of living. And I also think he may have enjoyed hanging around on the edges of boisterous groups of teenagers. That’s why we found him his social groups. They are a noisy happy group of young adults who also have disabilities.
I fear the soft bigotry of uniform expectations. I think it is counter-productive to ask a guy who functions like Nat to learn in a regular college classroom. On the other hand, programs in the Community College Consortium for Autism and Intellectual Disabilities (where I work as Director of Autism Adult Services and Outreach) begin with inclusion, by building programs aimed at men and women with significant disabilities. There the goal is more pragmatic, effective learning, on-the-job training as well as soft skill-building. Nat, for example, needs different processing time, he needs a certain level of instruction: simple, straightforward, and relevant to his life because he has difficulty generalizing.
Sure, I sometimes feel sad that he is not on that college-career track because I wanted that life for him. But he and I had to accept certain limitations. We had to make certain choices to ensure his success. We chose a path where Nat could be trained to work and to live as independently as possible, because we thought that would benefit him the most. More than sitting next to but never going out with typical teenagers in high school, and more than taking a drawing or photography class at a local college. We did our best for him. Others may choose inclusion, and they have the right to do so, but they must be aware of the possible pitfalls.
For me, I would rather see people get what they need and have that be respected, even if it is separate or Special. I would rather that people’s differences could remain as different as they are, as different as they need to be, and have that be just fine, just the way it is. Inclusion makes a fine beginning, but it is not the end.
About 13 years ago, we had a lot of trouble with Nat’s school placement. This is something I’ve written about many times, so I won’t bore you with a complete rehash. In a nutshell, the program stretched Nat too far; he fell apart, and channeled it all into fighting back at people, and none of us knew how to stop or help him. Despite all sorts of expert evaluations and recommendations, the school program refused to put in extra staff for him, opting instead to bar him from the school.
The only way I have ever described myself in that incident — that nightmarish time culminating in a team meeting that still makes me nauseated to think about — is as Mrs. Jumbo, when she struck out at all the other elephants and brought down the big top. Mad Elephant, the sign read outside her cage, and she was taken away from the circus — and Dumbo, her darling, beautiful blue-eyed, auricularly-challenged, misunderstood vulnerable baby.
As enraged as I have been over the years at this and other injustices regarding Nat (or my other two children), I must be honest and admit that I am also perversely proud and self-righteous about this image of myself. It is so rare in this life when we have the pleasure of being definitely in the right and the other side is so terribly wrong — this was a special needs collaborative, for God’s sake, kicking Nat out because of his special needs.
It probably was not so clear-cut a case as I perceived it to be then, or years later. The placement was not right for him, and this doesn’t have to mean that they felt Nat couldn’t handle it and they couldn’t handle him. It also meant that there were places he could learn better, without so much acrimony and effort. But I was so angry, and really scared, so I could not get to my most even-minded self. I sometimes wonder what would have happened if I’d been able to keep my cool and continue to negotiate — but who cares at this point? He’s 23, and he did go on to a better place.
I like to say that I learned from this episode not to overreact — it’s probably better in the long run not to take things so painfully personally, and to cut your losses. But did I learn that? Today this was put to the test. In my last blog post I wrote about how Nat was allowed during his day program — while on the job at the supermarket — to get soaking wet putting the carts away. Nat’s caregiver John and I were all incensed by this. How could the job coach have mishandled the situation to this degree, where he allowed Nat to go out into that cold wet winter weather without rain gear, or without his hood up?
John vowed to follow up, get Nat rain gear, have a meeting about this with the program, and really take care of it. “They have to understand that this is the disability,” John said. “They have to know he is compliant and so they have to take care of him because he will just do what he’s told.” I seethed and thought about switching Nat to another program, and basically chewed on my heart imagining docile Nat gamely going out to do his job.
But even as I talked about it, wrote about it, and fumed and worried about whether they were negligent, another image flashed through my head, of Ben coming home from the high school, soaked because he doesn’t have a raincoat or take an umbrella. I say, “Oh, Sweetie, you’re all wet” And dismisses me: “Not really,” even though his hair is dripping. And then other images, of Max walking miles and miles in the cold and the dark with friends, or alone, no hat, no gloves, just caught up in his life.
Still, I heard everyone fuming all around me about poor Nat, and that was where my head was. And then this morning, I drove him to his day program because he had slept over last night after Christmas in New Hampshire. We were early, so we sat in the car listening to music. I heard my thoughts going in a loop: I’m going to have to go in there and talk to them, how can I not? I’m going to have to get an explanation and have an ugly confrontation and be really strong and threaten to take him out of there and…
I thought about Mrs. Jumbo. I also thought about something Ned had said the other day, about how really the program has done a lot of good stuff with Nat, like believing in him for this job and helping him get so many hours. Keeping him active on the non-working days. Giving me glowing reports of his work. And I realized I was not worked up. I was going to do what I could. I was going to talk to them and show them that Nat is heavily monitored, by both his parents and his caregivers. In case somehow they missed that fact. I wasn’t looking forward to going in, but I knew I had to.
Nat and I went in a few minutes early and it was as if they were expecting me. I guess they saw me crossing the parking lot. The supervisor was very quiet, serious, chastened. Owned it right away. Newly-trained job coach. Miscommunications with the supermarket about rain gear being available there for the workers. Delay in telling the caregiver to bring Nat extra clothes. She apologized, and said she hoped he hadn’t gotten sick from it. And then it was over. We shook hands, and I left.
Driving home I thought again about Ben always walking home in whatever weather, just to be able to be with his girlfriend and not dependent on his mom. And I found myself thinking radically:
Why is it so much worse that it was Nat who got wet on the job? When I’m never this up in arms about Max and Ben getting wet and cold during their days?
Does it matter, a kid, or a young man, getting soaked from time to time? It does, but — it is not the end of the world. It’s not great, but it’s not a felony, either. We can prevent it next time, without bringing down the house and salting the earth. Yes, Nat has a profound disability that manifests itself in great passiveness and compliance — ironically, 180° opposite from the behavior that got him expelled from that special needs program 13 years ago. And I think we all feel so much worse when this sort of thing happens to Nat because — why? Because my other sons know what they’re doing? We worry that Nat was suffering, that he was dumbly doing what he was told, poor Nat, poor victim Nat, soaked and disabled. Baby Mine, little elephant with no one looking out for him. How sad that makes us.
Because he has a disability, we kind of unconsciously see him as innocent, childlike. And yes, he is more vulnerable than Max or Ben; that is why he must be supervised his entire life. But they are vulnerable too, in their own ways, being out in the world the way they are. And yet I’m letting them go.
So shouldn’t I also let Nat go to every degree I can, because he is a MAN and he is making his way out there, too? He needs supervision, but not like he used to. He has parking lot safety down now. Street smarts, to a pretty impressive degree. The ability to live away from us, and work a regular job, with no incidents for more than a year. The same guy who was kicked out of school at 10 for acting out aggressively.
If you think about this another way, without knowing Nat has a disability, he’s just a guy who may have been annoyed by working in the cold rain, uncomfortable, but who in the end shrugged and got used to it. You’d kind of admire that guy, rather than pity him. After all, for Nat, the important thing — the thing that makes him feel life is worth living, is to do what he is supposed to do. To get the job done. I don’t have to cry and rage at the uncaring world and Nat’s dependence because of autism. Because actually it is precisely his disability — the extreme focus that autism often brings — that makes him such a dedicated worker, someone who will even go get the carts in the freezing rain.
Nat went off to the Boston Ballet to see The Nutcracker tonight with Quest, his social group. John came by here with Nat’s suitcase after he’d dropped him off at the Rec Center. It came up that Nat needs a raincoat because as John put it, “When I picked up Nat today from work he was soaking wet.” Apparently his winter coat, his pants, and his hair, were completely wet from work. John asked the people in charge of Nat at his day program what happened, and they did not know. They said that he must have gone out to do carts or something in the rain and came in wet.
John asked them where was the job coach when this was happening, because it is a safety issue. Nat should not be allowed to get so wet, he could get sick. Where was the job coach? Where was the person looking out for Nat? Why didn’t they know that he was getting all wet? John said, “They should have known that Nat would just go and not say anything about being wet.”
Nat is very compliant, and someone was asleep at the wheel. John is on top of this, with emails to the people in charge at the day program, but as he put it, “If I don’t hear back satisfactorily I am going to turn the matter over to you.”
As far as I’m concerned, the matter is already mine because I am so mad, and so sad. John said he’d CC me on the next go around. I think I will call the day program as well.
Here is the thing, again and again. The disability prevents him from speaking up for himself. He just thinks he has to go because they are telling him to. Ahhhh, I hate that he didn’t know or didn’t think he had a choice, that he was out there wet, cold, and uncomfortable. No, no, that is not how I’m trying to run this world. But the fact is, I don’t run the world. If autism moms ran the world, sons would not get soaked in the rain. If autism moms ran the world, they would live forever. Or they wouldn’t have to, because the world would behave itself.
The good thing here is that, listening and looking at John, I recognized some of my own outrage and determination to set this right. He said, “I just was so upset, I almost yelled right there…” He is on top of it, he is right there with Nat. And I don’t need to be first in command on World Duty because John is.
But I’m still scared. I feel like something slipped today, and I’m not quite sure if everything is back where it should be. He’s a little hoarse and I thought I just heard him try to throw up. I have to remember, he’s strong and young, he’s not a little boy, he just got wet. A lot of us got wet today and we’re okay. He came home looking like a model, with new stylish clothes and his blond hair gleaming. He saw the Nutcracker, and when Ned asked “what happened in the Nutcracker?” Nat answered, “The girl fell down.” Maybe it was a bad day for The Boston Ballet, too. At least Nat is still standing.
The other day I was talking to a very smart woman about perfection. This is because I was wondering how does it feel to be Nat, to be so disabled that other people make so many decisions for you, no matter how much we try to allow him his own preferences. Other people let him know that it is getting to be bedtime. Other people plan his weekends; sure, he gets choices but someone else has designed the choices. We all know so little about what Nat wants to do, to wear, to eat. During a recent phone conversation he blurted out to me that he had been home all day. I asked him why, I asked him if he was sick. He said, “Yes. Your froat hurts.” I became alarmed and asked to speak to whomever else was there — basically, going over his head, not believing him.
Interestingly enough, he said, “NO.” He simply would not let me speak to any of the staff. I just did not know what this was all about. Was he sick? What was bothering him, was it his throat, or was that a default answer? He then said, “Go to social group!” And I wondered if he maybe was really not feeling well, because he was thinking ahead to Friday night, afraid he would not be able to go to social group. I reassured him that he would go.
I called back and spoke to the caregiver anyway, because Nat could be sick after, all. She checked his temperature and told me that he was normal, and that yes, he did go to his day program today. So why was Nat saying he’d been home? What was the truth? What was he trying to tell me? This interchange made me sad because I do not know what it must be like to have something so strongly on your mind and not have anyone understand you. It grabs me by the throat, even now, to imagine this. Does he feel less-than?
I then thought about some of the adults I know in Special Olympics, who know clearly about their intellectual disabilities. How did they get to that point of perfection, such solid self-esteem, that they didn’t feel “bad” about being this way?
And I realized that I am still hung up on this stuff. I am equating able-bodied with perfection, with superiority! I must still feel, somewhere deep inside, even though I know it is wrong, that there is something bad about “having something,” a disorder, a condition. Something that separates you out of The Glorious Mainstream. What is this squirrelly part of me all about?
I think back to the obvious, my upbringing. I was raised to go for perfection. The best of everything. One of the worst insults in my family was to call something “mediocre.” Never be a dilettante, do your chores, follow the rules, do everything right. In my twenties, this upbringing wreaked havoc on me because I realized (unconsciously) that I was not cut out to be perfect. I couldn’t keep up with doctor’s appointments, with the right diet, with reading the best literature. I started to feel fear a lot of the time, inexplicable, free-floating anxiety. An undercurrent of sick dread flowed through all of my experiences.
I started to imagine illness, or strange circumstances, things that did not happen, things that could ruin my life. I was aware of this terrible irony, that in fearing a life ruined by disease, I was ruining my life. But I couldn’t stop. Eventually, with the help of another very wise woman, I figured out that my fear was about needing to be perfect, and in control of everything. And so the more I went out into the world on my own, the more fearful I became because I was experiencing the fact that you cannot control things in this life. You can’t be perfect. The world under my feet had no bottom to it. You could just keep falling, forever.
I am a long way from those miserable days. I learned how to live with uncertainty, but also to trust myself. I also learned to forgive my mistakes and imperfections — well, a little bit. But you know that saying that you have to love yourself to love other people? A twist on that would be if you can’t tolerate your own human flaws, then chances are others’ flaws are a big deal to you, too. So I still obsess about the bad stuff I see and that happens to me, going back to that childhood belief that I have to get rid of the bad stuff.
So the person I was talking to the other day asked me if it was possible that the people I know in Special Olympics are beyond where I am. That those who have intellectual disabilities, who acknowledge through so many aspects of their lives that they have this thing “wrong” with them actually feel great about their lives, and do not feel bad about their disabilities, their limitations. Maybe Nat doesn’t, either. Maybe the only one with something wrong with them is me because I still believe that perfection is something we can define and see. Something real — and desirable. When the only thing real about striving for perfection is that it makes me miserable.
The Sandy Hook Elementary School tragedy has ripped open the heart of this country and we are scrambling to stop the bleeding and the pain. For my part, I find myself thinking more than ever about mental wellbeing, because I know firsthand about mental challenges — the autistic kind and the mood disorder kind.
I am hurting for this country, and of course for the Newtown victims, but I’m also very very worried about us as a people. I’m thinking that the focus of our raging energy is going to be mostly around gun control — which I support — and also around whether or not Adam Lanza had an autism spectrum disorder. The latter question then will be all about how autism does not equal violence, etc.
I have little doubt that tighter gun control — perhaps mostly in terms of eliminating assault and semi-automatic weapons — will help decrease some violent crime. And I have little doubt that it was something other than autism/Asperger’s that led to Adam Lanza’s violence. But truly, I want our hearts and minds instead to turn to mental health, and what that is in this day and age. By and large, mental health is still weighed down by tremendous stigma. I’ve been so used to thinking and writing about autism as something people must understand, to eliminate prejudice and stigma. To foster community inclusion, friendship, fellowship. But now I am thinking about how that compassion and understanding must extend to mental health disorders as well. We need awareness, understanding, research, treatment, and coverage.
And we are a long way away from that. So many of us are scarcely able even to admit that we go to a therapist, much less about being on medication. Certain older generations don’t even consider psychotherapy as any kind of valid solution to emotional problems. And anti-depressants? It is often considered a weakness to take medication for depression or mood disorders or OCD, etc., rather than a physiological necessity.
And even if you do accept the fact that most people at one time or another need professional help with their emotions and psyches, and that some people need medication and professional help for the rest of their lives, how many people can afford that kind of treatment? Even in my so-called enlightened and progressive circles, therapy is not something to be talked about except in teary whispers or self-deprecating remarks.
So if we as a nation are so far away from treating mental illnesses and disorders, let alone even talking about or knowing about them, then how can we expect for disturbed and isolated and misinformed individuals to take care of themselves? There is no justification for the horrible things Adam Lanza did, none whatsoever, but if we are trying to understand and prevent another tragedy, shouldn’t we take a deep and honest look at how we as a people deal with mental problems? If we can’t even talk about mental illness without being ashamed, if we can’t seek out routine therapeutic help or afford the medications, how can we hope to improve and heal?
An old friend of mine is a retired high school principal; I’ll call him “Jim.” Jim has been enjoying a second career as an adjunct professor of history at a community college. He loves his job; he loves his students. Like most community college classrooms, Jim’s mix of students is very diverse: recent high school graduates, immigrants, older people going back for new training, seniors learning new subjects. And in the last few years, there is a new crop of student that has sprung up: the student with autism and intellectual disabilities.
In the last ten years, the number of students on the autism spectrum has grown astronomically. Whether this is due to environmental factors, genetics, or the broadening of the autism spectrum, the outcome is the same: more students coming up through the schools and soon to be entering college and the workforce.
At the beginning of a recent term, Jim was given a letter indicating that a particular student of his had certain disabilities, but only mentioned that he would need extended time in testing; no other guidance. He was not told that in this class of 30 extremely differently performing students, that he would be having a student with a fairly significant disability like autism.
This particular student had both social and communication deficits, mostly about regulating his impulses and boundaries. These challenges manifested themselves in his class performance and assignments, which were often three times as long as they were supposed to be. “When he first handed his papers in, Jim said, “he would write everything he knew about the subject. He wouldn’t get to the question until the very end. He’d hand in six pages if I asked for two, single-spaced, one entire paragraph.” Jim’s solution was to work paper-by-paper, and sentence-by-sentence with this student. Jim said, “A lot of professors would say, ‘they don’t belong in college.’” Needless to say, Jim does not agree.
In September he worried that this student wouldn’t be able to accomplish an oral report in front of the class. Of course the student was reluctant. He spoke way too loud and never looked at the other students. “He was compelled, when I called on him, to bring everything in that he knew of the subject.” When that happened, Jim would ask him a series of questions to bring him to focus more quickly on the issue at hand. He coached him in class, but quietly, sensitively, and respectfully. Any time this student spoke to someone,” Jim said, “he would turn his head 90 degrees away.” Or he would have difficulty with responding appropriately to the material. With one particular assigned historical novel, the student came to class without having done the paper. The book had effected him so profoundly that he couldn’t manage or contain his feelings. Jim was afraid that the rest of the class would not respond well to their peer’s intense emotions: “In class, when we spoke about it, I tried to interpret the other kids’ smiles. Were they mock smiles? Or were they happy that he was expressing what they were feeling?” Jim decided the latter, and that this student actually could help his fellow classmates. He could vent for them. “I felt that he was expressing the class’s feelings that I had gotten in writing from them, that he was expressing them out loud.”
Bringing this student to come to the front of the room was a process that took the entire semester. He chose the very last report slot. “I felt that would give him a chance to see all the other students give their reports and he would see the appreciation, the clapping after every report,” Jim said.
When it was time for him to give his report, the very last oral report of the semester, Jim was apprehensive. Would his student be able to do it? Would the others treat him right? But he had taken careful steps to ensure this kid’s success. Periodically he’d had the students work in small groups of four, and kept the groups the same all semester. This fostered a comfortable familiarity for this student, and allowed the others in his group to see his strengths — he could always be depended on to have vast amounts of material at his command. And Jim would monitor the others’ behavior, to ensure their respect for this student’s differences.
The student began delivering his report, head turned to the side, looking only at Jim. So Jim walked to the back of the class so that the student would look the right way. Jim saw that the report was going to go beyond the class period. But Jim gave the signal to the others to stay and listen. Because the students knew him so well by this time, and because Jim had modeled care and respect, and gotten him to work in a small group, they all behaved appropriately. No one rustled papers or gathered up bags. “And all the students stayed,” Jim said. “And then when he finished — they applauded.”
Recently I had the happy luck to meet Scott Lentine, a young man who works at ArcMass, and who has autism. Scott was at the Current Trends in Autism conference with his mom, and I thoroughly enjoyed talking to them both. Scott is a poet whom lately has been circulating his poems broadly and deeply among the autism intelligentsia, as well as Sacha Pfeiffer of NPR. Today he sent me his latest poem, and it takes me right back to my summers on Cape Cod. I want everyone to see it and fall in love with summer, and this young man’s wide open heart:
Marshfield Memories poem
Today is a beautiful day on the beach
There are plenty of people and dogs to see
The water is warm and the sky is bright
And seeing some people flying a kite
I am having a fun time with cousins and friends
Hoping that this day will never end
The ocean and sands are comfortable and feel so right
Talking a walk towards Brant Rock in the strong sunlight
Now it is the evening of the third of July
Watching the amazing fireworks from the seawall go by
Talking with family about the latest moments of the day
And meeting some new friends along the way
It was a great time on the beach today
Reading a book and going into the ocean on a bright clear day
These are moments that I will remember for a long time
Being on the beach on a nice warm day is truly sublime
The phone just rang, “Private Caller.” It’s Tuesday, so I figured it was Nat. We had our usual conversation, something like this:
“Hi Darling! How are you?”
“So did you have a good day today?”
“What did you do?”
There’s some fumbling with words, false starts, and then: “You went swimming.”
“Oh, good! Who did you swim with?”
A pause. “Richard.”
“And where did you eat lunch?”
“Oh, that’s a nice mall.” And so on.
I don’t know why I said that, I guess I was just relieved that they went to upscale malls, not sleazy ones. I don’t mind him visiting malls regularly, don’t most Americans?
But sometimes I feel sad about his life. Not what he does, exactly, but the fact that no matter what we do, no matter how mindful staff are about self-direction, independence, Nat still has most choices made for him. And I wish that were different.
I get a tinge of pain every single time I say goodbye to him, still, after all this time. He gets picked up at 11:30 Sunday morning from his weekends here, and even if we ask him “do you want to leave in the morning or after lunch,” and he answers, it still makes me sad. It still seems like things are chosen for him. It is still a limited choice, he still doesn’t know to say, “What if I don’t want to go at all?”
Sure, you could argue that none of us has absolute freedom. Well, I’m not talking about absolute freedom. I’m talking about a normal amount. Max chooses his college, within a handful that accepted him, and he chooses his classes. He chooses his clothes, his food. He chooses his friends.
Ben has a girlfriend now. He just decided he liked this girl in his art class, and the next thing we know, he’s going out with her.
Nat sometimes seems like a prisoner of other people’s calendars, other people’s decisions. And I wonder, does he know? Is he sick to death of being treated kind of younger than he is?
Ned says, “It’s the age-old dilemma: how much does Nat know? What is he aware of?” We just don’t know and so we have to hedge our bets. We have to aim for the denominator that is the most likely. Not the lowest, never that. I aim high, and I watch and listen so carefully to see where it lands. I know now that at least he can make a true choice, he can even sometimes offer up true accounts of things. So maybe someday he will be volunteering his opinion, his ideas, his wants, on a regular basis. Declaring himself, the way Max has a major or the way Ben has a girlfriend. We have to declare ourselves somehow, don’t we? And if we can’t, and others project their own shadow shapes onto you, how do we learn to step out into the light?
As George Harrison might have said, “I really want to see you, Nat, but it takes so long, my Nat.”
“One in 88 can’t wait.” This is the newest rallying call of autism advocacy groups. The phrase is provocative, almost tinged with panic. Our society and government must recognize the gravity of the one in 88 number, and act accordingly, with real solutions that directly address the needs of such a large sector of our population. But this new wave of need does not have to feel like a disaster in the making. Not if we think differently. Not if we realize that one in 88 can’t wait for their lives to begin. One in 88 can’t wait to learn, one in 88 can’t wait to work.
The Community College Consortium for Autism and Intellectual Disability is turning the challenge of ASD into opportunity, by turning to the students with autism and intellectual disabilities — who are already on community college campuses — and asking them “What can you do? How can we, the community colleges develop your skills and interests so that you are a participant rather than a bystander?”
The Community College Consortium knows that skills and real jobs are not a given for anyone today. We all need training that is relevant and useful. How do students with ASD and intellectual disabilities acquire valuable vocational experiences if they are viewed as a marginal, burdensome, iffy group? If employers shy away from hiring these guys because they have no way of knowing what specific skills they have? Employers need to think about what is good for their business. They want some certainty about a potential hire, besides a resume or a job interview, particularly if a candidate has communication, cognitive or social skill challenges. To this end, CCCAID has just partnered with Thompson Hospitality to create certification programs in the food services industry. Using a curriculum created with Thompson’s actual job expectations and requirements, students on the autism spectrum and with intellectual disabilities will be trained in precise hospitality industry skills. These students will work towards a certificate in hospitality, an industry gold standard that they can take to a potential employer and remove any uncertainty from the hiring process.
CCCAID understands that there is another way to look at what “One in 88 can’t wait” means. There are so many adults with autism who can’t wait to start their lives — meaning, they are excited by the future. Who are ready and able to work — who just need programs that accommodate their learning and training needs. The Consortium’s partnership with Thompson Hospitality will give them the tools and the assurance to get there.
Now imagine if other industries could think as Thompson does — medical, technological, childcare, agricultural… — and if all of our country’s community colleges joined with the Consortium to take these very natural next steps. One in 88 starts to look more like a solution, a boon to the workforce, rather than a burden on the world, doesn’t it?
I am interested in moving from academia and writing to the field of government policy advising, particular in autism and disability policies. I would like to work at the federal or state (Massachusetts) level. I have a great deal of relevant experience and skills for this type of job. I currently work part time as Director of Autism Adulthood Services and Outreach for the Community College Consortium for Autism and Intellectual Disabilities (CCCAID). In September I was on a panel at the Association of Community College Trustees annual conference. There I spoke of the pressing need for community colleges to develop programs dedicated to serving the needs of those with autism and intellectual disabilities, who often graduate at 22 from the public schools with little or no vocational or independent living skills.
Community college, however, is just one area that society needs to rethink in terms of those with autism and other disabilities. Adult disability services in general, and the systems these adults must navigate, also need this country’s attention and support. I know about this firsthand: my son Nat is 23 and has fairly severe autism. I got my disability education and experience the hard way, by making many mistakes, thinking on my feet, and flying by the seat of my pants. I became a writer to raise public awareness of what parents like me face; back then the number of kids on the Spectrum was only just beginning to balloon, and society was simply not prepared. I worked as an education columnist for our local paper and also began writing pieces for the Boston Globe, the Washington Post, the New York Times, and eventually wrote three books on autism and the family. My articles on Special Olympics helped forge my friendship with Tim Shriver, their CEO and Chairman. Tim invited me to a White House dinner in July 2006, where I made connections with Maria Shriver, the late Senator Kennedy, Senator Chris Dodd, and others involved with Special Olympics. I also had the privilege of giving a copy of my first book, Making Peace With Autism, to the First Lady, Mrs. Laura Bush.
On a local level, when I discovered that our school system had no autism programs, I ran for School Committee, where I served for five years, on several initiatives, one of which was the Legislative Subcommittee. My colleagues and I created an annual breakfast for our legislative delegation, making the case for more money for education and improvements to our state’s implementation of IDEA. This experience allowed me to form positive relationships with members of our State House, which I still maintain today; most recently I spoke with my state senator’s office volunteering to help on an election bill that would simplify voter registration here in Massachusetts.
I have been very politically active in my state and town, joining and founding various parent and advocacy organizations, holding forums at the State House and lobbying with our Arc on budgetary issues. On a national level, I have been giving workshops and keynotes to autism and disability professionals and parents like me, and always, also learning from them – and above all, learning from my son.
I would bring all of my years of advocacy experience, my writing skills, my speaking skills, my passion, and my energy to disability policy. I can also offer my facility for understanding and articulating issues and solutions that can help people like my son live fulfilled lives through work, continuing education, and community inclusion. Working in disability policy feels to me like a logical and exciting next phase in my journey as an advocate, writer, and mother. My CV is at the link here.