Sometimes it feels like it’s all autism, all the time for me. Most of the time that takes the shape of advocacy work of one sort or another. Yesterday I was filmed along with NY Times Pulitzer Prize-winning journalist Amy Harmon for the PBS show America Reframed in a discussion about Turning 22 and the documentary Rachel Is. Rachel Is takes us into the 21st year in the life of intellectually challenged Rachel Glynn as she turns 22, and features her mom Jane, and her sister Charlotte (who directed the movie). The movie lays out very poignantly and honestly (sometimes cringingly so) a family’s struggle with not knowing what will happen for their developmentally disabled loved one — where she will live, what she will do with herself. The film ended happily for this family but the viewer was left with the solid weight of responsibility we have as a society to spread that kind of good luck around. Hopefully when the general PBS-viewing public sees this film they will now see Our Guys like never before. And seeing is believing.
The whole time that I sat there on that set I was straining to remember every single thing I needed to say for Our Guys. By “Our Guys” I mean autistic or developmentally disabled young adults who need support to live any kind of basically decent life. I mean guys like Nat who currently need life skills support, job coaches, jobs, housing support, educational support. All the areas of life that we typically developing adults may take for granted. I hope I got it all out. The opportunities to share stuff with the public and to get them to think beyond their own concerns are very few. I try to create such opportunities with my writing. I am always hoping that someone who doesn’t know, or who doesn’t get it, will hear me or read me and a light will go on. And that light takes us all a little bit more out of the darkness — be it in the form of funding, program creation, employing someone with ID (Intellectual Disability) or ASD, (Autism Spectrum Disorder) or just plain trying to connect personally with Our Guys. Or maybe the next time they hear someone disparage public support for Our Guys, they’ll try to educate that person.
Today my work came in a different form but was basically the same. There was a gathering at Brandeis University of parent advocates and a few state representatives from Massachusetts, as well as a representative from the Executive Office of Health and Human Services (which controls our Department of Developmental Services, DDS). There was a very lively and fruitful dialog for 2 hours about policy and practice in terms of adults with ID or ASD. Again, I was sitting up straight, focusing all of my brainpower on what was being said, looking for opportunities to interject, to push the conversation towards creating a system that Our Guys can navigate. The pieces I contribute are usually around vision, of looking at what is and asking why or why not? I’m not as good at speaking to the nuts and bolts programs we already have, but I’m getting better at the alphabet soup and jargon out there.
I think I have figured out that my strength is in taking a problem and casting it in terms that most people can not only grasp but connect with. I like to illustrate the problems honestly, but to also find the hope that you can find underneath if you rub away at the tarnish of heavy bureacracy and close-mindedness. People need to hear what’s bad about what’s going on, but they also need to see what is good and what can be better. A different perspective is hard for us to grasp — at first — but once we have been spun around to see, sometimes it is the only thing we can see. Welcome to my life.
What: Advocates is joining forces with Massachusetts Families Organizing For Change to present their popular event series, A Full Life Ahead, at our Life Skills & Learning Center in Ashland, Mass. The series focuses on transition, employment, housing, friendships, and other topics that will lead to interdependent, full lives in the community for young adults with disabilities.
Join us for our first workshop together, “A Full Life Ahead: What Makes a House a Home?” Parents, Robin Kantrowitz and Susan Senator, will discuss challenges and successes of setting up and maintaining living arrangements for their sons. Jeff Keilson, senior vice president at Advocates, will discuss a variety of options including Adult Family Care, Shared Living, and group homes.
When: Tuesday, March 4, 2014 from 7 – 9:00 p.m.
Where: Advocates Life Skills & Learning Center 290 Eliot Street Ashland, MA 01721
Contact: Please RSVP to FamilyServices@AdvocatesInc.org or call (508) 628-6801. Space is limited!
Here it is. The legislation that will help you, family members and self advocates in Massachusetts who either have children with developmental disabilities or are developmentally disabled themselves, particularly those aging into adulthood. If you live in Massachusetts, you must cut and paste this letter into an email to your your legislators. This is how it is done. You cannot sit by and let others do it for you, or do nothing. You have to be an advocate, even if you don’t want to. And Gary Blumenthal of the ADDP has made it so easy in this draft:
Open Letter to Massachusetts House Members
People with disabilities have greatly benefited from the compassion, leadership, and vision of Massachusetts elected officials. Through the darkest days of the Great Recession, members of the General Court protected services and supports for people with disabilities. Please know we are grateful to you.
As you meet with Representative Brian Dempsey and the leadership of the House Ways and Means Committee we ask you to include the following issues on your List of Priorities:
1. Please support full funding of the DDS Employment Blueprint Initiative (Line Item 5920-2025). ADDP & The Arc of Massachusetts request an additional $5.6 million over the Governor’s House Two Budget to enable people to move into Employment and Community Based Day Supports. This request will be matched 50% by the federal government and is needed to implement the state’s Employment First Agenda and the Disability Employment Blueprint.
2. Please Support the Governor’s Budget with regard to Chapter 257 DDS Residential Services and DDS Family Support.
3. Please support increased funding for Autism (Line Item 5920-3010) and Turning 22 Services and Supports (Line Item 5920-5000.
4. Please support increased funding for Brain Injury Programs with an additional $2.8 million, Line 4120-6000 to begin implementing the Brain Injury Commission Report.
Your support for these items will help change the lives of thousands of Commonwealth citizens with disabilities for the better and help people live fulfilled lives in the community.
Today at the Massachusetts State House there was a hearing on bill H. 3364, “An Act to promote housing creation for persons with disabilities.” The hearing room was full — although some of the audience were there for a different bill — and I was heartened by the size of the group. We were all parents but most also had a title and an autism organization they were representing. I was just me. The Autism Commission and Asperger’s Association of New England were represented, as was Autism Housing Pathways. Former State Rep Barbara L’Italien was there, and she is now (thankfully) running for Senator! Leslie Long and Russ Kenn were there from Autism Speaks.
Leslie presented Autism Speaks’ recent research and housing survey of people with autism and their families and all issues pertaining to housing, including their perceptions of what is out there, how to obtain funding, how to get help and support, etc. Something like “10,000 responses, including close to 400 from individuals on the spectrum,” were gathered, according to AS. A pretty impressive sample. Even though I’ve said before that I don’t like the negative, autism-is-like-prison rhetoric AS sometimes uses to gain the attention of the media and donors, and I do wish that they would put even more of the millions they are already putting directly into family supports, I think it is clear that AS definitely is doing some very strong advocacy on behalf of autistics and their families. They may be very heavy-handed and frankly a bit Gothic in their representation of autism, but resources for people on the Spectrum and advocacy at the State Houses may help balance things out a bit. I hope so. We can’t all agree all the time on everything, right?
Anyway, here is my testimony:
When my autistic son Nat was 11 we had to seriously consider placing him in a residential school setting. Things had gotten pretty severe in our house. I had a 2 year old and an 8 year old. It was late wintertime, 13 years ago. Nat had attacked me, clawed at me, while I was standing at a T stop holding the baby in one arm, the stroller looped over the other. I did not know how to stop him. I just remember crying out to him to calm down while the crowd on the platform stared, puzzled and stony-faced.
Somehow, that time, it ended okay. No one was hurt, other than my scratches. We got home and even though every one of my babysitters had quit by then, we made it through another day, another week. Spring came, along with a new medication – which helped. We did not end up “going residential” as autism parents call it. But we knew we could not put it off forever.
We held on for another 6 years, with Nat improving and then losing it, one step forward, two steps back. At 17 he moved out to his school in Randolph, leaving me behind with a broken heart and his little brother with a diagnosis of Post Traumatic Stress Disorder.
It was the best thing for Nat. He learned how to live with others, because he finally had the structure and support he needed to be comfortable with the world around him. The calm that this home created for him enabled him to grow, at last, and be able to take in information from the world around him. He blossomed, and we healed.
Flash forward to today. At 24 Nat is in a group home near us, one that was put together with input from the residents’ families. Nat has a part-time job at Shaw’s working the shopping carts and is a happy, productive guy. The 4 roommates have similar challenges, similar interests. There have been some bumps in the road but the house is doing well.
I’m writing a book about autism adulthood. I have interviewed so many parents like me, who have similarly challenged kids but cannot manage anything like what Nat has. They do not have a plan for their autistic adult child’s future. Like Karen, whose son sometimes needs to be restrained by 5 people. But because he passed the MCAS, supported housing is not an option. Or Lynn, or Fran. Their grown children not quite severe enough, yet nowhere near being able to live on their own.
No one has ever shown them how to maximize the funding streams – as if there were really any that are adequate for living in Massachusetts. If you’re lucky, your school system has discussed Transition to 22 at your team meeting. But will the school people know about housing supports? Get on the Section 8 waiting list, we’re told. Section 8, with a ten-year waiting list. How about starting a home yourself? Got a spare $100,000? How about getting your town interested in more supported housing? Ever hear of NIMBY? How about Adult Foster Care? What the heck is that?
How can you find out about any of that if you are taking care of a disabled adult and can barely leave your house, let alone attend a housing workshop? How do you find other families with an adult child like yours, who live in the same difficult situations?
They did not have the ability to get their children residential supports during the school years – not because their children didn’t need those supports but because there were just too many other things to manage. Full-time jobs. Other kids. Intractable or broke school systems.
And if they could not manage getting residential placement when their children were still in school, there was no way there would be anything like that available to them in adulthood, where there are no entitlements beyond DayHab. Don’t get me started about DayHabs, which are the institutions of today.
So you have parents who are aging, and with adult children living at home, with the same challenges Nat had at 11, but now with adult bodies. They probably have some supports during the day, but what happens when the staff leave?
These are families living scared, living moment-to-moment.
What will happen when the parents die? There is no clear answer then, either. The state takes over, somehow. That’s what we all tell each other.
Why does the state take over at that miserable point, but offers little help before that? Why do we go from a strong public education experience, to the dead end of these adults living at home? How does that make sense from a policy or a humane perspective?
Something’s gotta give. Please give a favorable recommendation to this bill.
And here are the Talking Points for the bill:
An Act to promote housing creation for persons with disabilities
The bill is sponsored by Rep. Jason Lewis of Winchester, and is intended to increase housing production for individuals with developmental disabilities by doing four things:
- Allow a mechanism for families to open up Mass. tax-advantaged savings accounts that can be used for housing expenses for a family member with a disability; these accounts would be run through MassHousing.
- This is similar to what would be accomplished by the federal ABLE act, with state tax benefits only, and focused on housing.
- Increase and stabilize funding for Individual Development Accounts by funding it through a tax credit instead of a budget line item;
- This item has been cut from $700,000 to $50,000 in recent years. Oregon, using a tax credit, funded their program at $10M last year.
- Make housing projects that serve clients of DDS and DMH who do not qualify for funding through the Community Based Housing or Facilities Consolidation Funds a priority for funding through the Housing Innovations Fund;
- Clients of DDS and DMH are excluded from CBH;
- FCF only applies to those coming out of institutions, who are already in community living, or who are “awaiting services” (meaningless, as there is technically no DDS waiting list);
- Conversations with HIF indicate they won’t prioritize any project serving DDS or DMH clients, as they assume they are covered by FCF, unless they receive some external direction to do so.
Allow each bedroom to count as one unit of affordable housing in homes where services are funded through MassHealth or other agencies, as opposed to only those where services are funded through DDS or DMH;
This is automatic for DDS/DMH homes. For a home where services are funded through AFC or GAFC, it would need to be appealed through the Housing Appeals Board and there is no guarantee it would pass. Changing this would create an incentive for local affordable housing trusts to subsidize housing for individuals served through these programs.
Dear Autism Mommy Swami:
How do you get started on finding a place for your adult child to live? How do you begin to feel comfortable that he will be treated well? Is this covered by Medicaid? My son is only 11 but I know we will have to be making these decision and am wondering how early we have to start looking.
Is your son still taking medication for anger issues? Is this a life-long issue?
Thinking Ahead Mom
Dear Thinking Ahead Mom:
1) Regarding an adult child’s housing, your best bet is to apply to your Department of Developmental Services now and see if you can get him in the system for funding. This is usually called Waiver Funding. So if your child is eligible for DDS prior to 22, he stands a better chance of getting the funds for housing and staff post 22. Call the DDS about support services now, even though he’s still at home.
2) Start saving money, whatever you can put away, for some sort of housing for him, but do not put it in his name. Consult a Special Needs Attorney to find out the best, legal way to save for a special needs child.
3) Be sure he is on SSI the moment he turns 18. Qualifying for SSI at 18 I believe will then qualify him for Medicaid, which does have programs that support people like my son, but it is different in every state. But the first step is go for SSI when he is 18.
4) As soon as he is 18, get him on the waiting list for Section 8 housing. You can apply for that in your town’s Housing Authority. There’s the national list and there are also local lists. Section 8 is a Federal program that offers vouchers for affordable housing (very very low income). It is a very long waiting list but he should be on it starting at 18.
As far as medication, Nat no longer has anger issues. We are bringing him down from Risperadone, weaning him from it. By age 18 he had learned how to express his frustrations, and he also understood more about the world. 11 was a tough age for Nat. Things got better once we had him start Special Olympics, though. It was a good way to socialize him.
I don’t think it is helpful for us to think anything will last forever in our guys! They grow and develop and learn. Stay optimistic!
Hope this helps!Love,
The other day I had an email from an NYU sophomore asking if she could interview me for her Oral History class project. She wanted to know about mothering a child with autism. I told her that I’d love to, but that my son was now 24. She said that would be great anyway. She was down in New York, however, so we were not sure at that time how to proceed.
Then yesterday I was contacted by her project partner, Chris, who happened to be in Boston visiting a friend. Chris and I agreed to meet at my favorite coffee shop in town, Peet’s. Nat was home for the weekend, so I asked him to come with me; the interview was partly about him, so he should be there, too.
It was snowing really hard. I had to drop Nat off and then park, or he wouldn’t have been able to open the door against the hardened snow drift. We went into Peet’s together and found Chris, a smiling young man. Nat shook Chris’s hand. Then he went right to the glass case and started saying, “choc chih cookie,” before I had even gotten there. This was a happy development, however technically/socially incorrect it may have been, because Nat was so confident and was speaking up for himself without even being prompted! I did call him back to the end of the line, though. How can something be so right and so wrong at the same time, goes the love song, and it is also the song about Nat in the world.
Every time something like this get-together comes up now I realize either just in time or a little too late that Nat should be part of it. I can’t believe that I still have such a hard time thinking of him as a definite part of a get-together, rather than, well, luggage. That sounds horrible, right? But listen, to some degree, any time a parent has to bring a child along, it is a little like hefting more than you’d like. Until that child starts to grow up and become more visible, more there, he is more just cute baggage than anything else.
But Nat is not a child! Nat is 24. He is not luggage the way a toddler would be. He is 5’11″ and very garrulous. No, he does not talk directly to the people we are with, but he is very much a part of the living, moving social noise of any gathering.
But: there was a time, and I still carry the trauma of that time, when Nat was highly unpredictable and scared me in public. It took years for me to get used to his being stared at, and also to realize that he was no longer going to try to hurt someone. He used to be so much less aware of what the outside world expected of him, and even if he did know, he did not know how to get the right behavior out of himself. He must have gone around with so much frustration I can only imagine it was the way third grade math was to me, but for Nat, it was every day of his life.
I need to remember that things have changed. I need to find a way to keep that fact with me, and bring Nat into every picture that is about him or that would interest him. He is a grown man and he seems so much more comfortable in the space around him. Certainly those around him get it better than they used to. They make room for his pointy widespread elbows, his faster pace, his sudden peals of laughter. He does not get stared at as much, or maybe I don’t notice it anymore. I’d like to think both are true, like maybe I now feel we are more deserving of respect, he and I, because of all we’ve been through together. Now he is a grown man, and a happy and confident one — albeit not speaking the language around him — and so people just see the man and they make room.
And indeed, we did find room at the long marble countertop against the cold wet window. I was in the middle while Chris asked me questions. Nat was on my left, scarfing his cookie and sipping cocoa with great animation. I think some of what Nat and I told Chris (in one mode or another) moved Chris to tears at times. Chris really got it. At the end of the interview I went to shake hands to say goodbye to him and he said, “Actually, I’m a hugger, so bring it in.” We hugged. Nat, however, is not as much of a hugger so in saying goodbye, he shook Chris’ hand, saying, “Hi Chris.”
As we walked back to the car, I tried to summarize the meeting because I was not sure if Nat knew why I had been talking so much about him to this stranger. I said, “People want to talk to me about you, Nat. A lot of people have little children with autism, like you. A lot of people want to know how to help their children be as great as you. You’re a really good person, Nat, and they want to know how to be a good person, like you.”
And we drove home through the heavy snow. Everything was just white and black, except the bright red lollipop stop light.
Probably one of the biggest joys I’ve found in being a mother is my children’s ability to surprise me. I experienced this while talking to my middle son Max the other day about the movie Her. Max and I were dissecting the film, because he is a film major at NYU’s Tisch School, and I always want to hear his take on the director and cinematographer. At one point in the conversation I told Max that his brother Ben, who is 15, had come along and had a real appreciation for the technology depicted in the film.
Max was not at all surprised by how Ben liked Her. He and Ben are four years apart but they have always shared a love for video games, animation, and graphic design. I have always felt so proud of their relationship, the way Ben looks up to Max, and the way Max, savvy ultra cool older brother that he is, still rarely looks down on Ben. Maybe all parents are tickled by seeing their babies taking shape as real people and finding they like each other for who they are — and not just as a sibling who shares your family space.
Which is why it often pains me to witness Max and Ben’s relationship with their older brother Nat. Nat has fairly severe autism and Max and Ben do not, so communication has been a struggle. Nat can talk, but his processing is so slow and convoluted that it is extremely difficult for him to focus and then get any words out. Even though many of us who know Nat feel that he understands far more than he appears to, it is hard to keep that in mind at all times. And when you are a younger brother living a very fast-paced, high tech life, it is beyond difficult to stop everything and wait and rephrase and wait for a brother to answer. And when he does answer, his language sounds much younger, childlike; it is unfortunately easy for people to underestimate Nat and dismiss him. Even though Nat’s brothers do love him in their own unexpressed way, their relationship with him is somewhat of a leap of faith. Their whisper-thin bond with Nat is something I have to listen carefully for, and strain to see. It is there, but it is so often intangible, and I am so very hungry for more.
So when I told Max in an Instant Messaging conversation that we had also taken Nat to see Her, I was surprised by his reaction. He wanted to know what Nat thought of the movie. I was ashamed to admit that I had not even asked him. We are all creatures of habit, and I am no exception. Sometimes I forget that Nat is experiencing life in as deeply and layered a way that I am; I just don’t know what that looks like and he does not offer to tell me. In asking me what Nat thought of the movie, Max reminded me that Nat has a full psyche and that Nat is a part of Max’s:
Me: I don’t know what Nat thought, but I know he must have loved the orange! [Her has a lot of the color orange in it, something Max and I both loved about the film.]
Max: you brought Nat? interesting. did you ask him what happened?
Me: the four of us went. Nat paid attention the entire time, never looked around.
No I did not…
Max: that would be an interesting perspective
Me: yes, good point.
Max: it could make an interesting blog, actually
Me: for you or for me?
Me: what’s the angle?
Max: watch movies with nat, and then ask him what happened in it and record his responses
some guy runs a blog where he asks his Italian father, who doesn’t speak much english, to review movies
and those are always funny, which these might not necessarily be but it could still be interesting
Susan Senator: sure. but if you were to write a particular post about it, do you have a theme, an angle?
Max: oh, no. it would be a blog, not a post. just the title of the movie and his response or the dialogue, if there’s a conversation around it. could probably even work as a twitter account, he’s pretty succinct
Me: Well, I enjoyed taking him because he was so into it, and he’s a good person to eat candy and popcorn with.
He is indeed
Max: doesn’t waste words
Me: He boils it all down
[At this point I think we were both remembering how Nat often answers, "You fall down," when asked what a movie was about. This goes way back, to when Nat watched his first live-action movie, The Matrix, and was very impressed with how Neo falls off skyscrapers and survives each time. "You fall down" has become a family meme.]
Max: the majority of hollywood films, billions of dollars annually, cut down to “you fall down”
Me: LOL. actualy, Joaquin Phoenix did fall down. in the subway or was it on the street. You can get Nat past that if you ask again, slowly and seriously. like when he said, “Tiger,” about Life of Pi.
Max: hahaha. well, that kind of does sum it up
Max: it’s like the most minimalist movie review possible.
Just bare bones AOL Instant Messaging, terse typed dialog, smileys and LOLs, but the whole time we were talking/messaging, I had tears in my eyes. Those boys — both of them — say so little, and yet, so much.
I often feel troubled by not understanding Nat and his state of mind. I do not believe in my heart that what you see is always what you get. I wish I could. People say, “If he doesn’t seem unhappy, he’s not.” Yes, but no. Sometimes I am not satisfied with that. So here is what I want to ask him:
1) Do you understand what I say when I speak normally, that is, quickly, using metaphor?
2) If so, do you feel bad when I adapt what I’m saying to a simpler language?
3) Do you know that I respect you, no matter how I talk to you?
4) Are you lonely?
5) Do you feel left out when everyone around you is talking? Or maybe you’re used to it by now?
6) Do you understand why we are planning your life without really knowing you how you feel about it?
7) Do you wish that you and Ben were close?
8) Do you feel Max reaching out in his quiet wispy way?
9) What do you want for your birthday?
10) Have you ever been abused?
The Arc of the US’s Autism Now Center has partnered with the Autism Self-Advocacy Network (ASAN) and has written an excellent booklet, “Welcome to the Autistic Community!” This is a positive-language, informative, accessible document with clear illustrations, that gives a newly-diagnosed autistic person a handle on what autism might mean for him/her. There are chapters like “Am I Okay?” and “Where are the other people like me?” and “What are my rights?” The booklet also covers the topic of differently-developing brains, sensory overload, and self-esteem.
My one piece of advice: I want them to put out a first-grade reading level version, so that someone like Nat can read it to himself or have it read to him and really be able to parse what it means to be an autistic adult. I don’t want anyone to forget that some autistics have intellectual disabilities. I want to be sure that all of these efforts at inclusion, acceptance, and accessibility do not pass over someone like Nat.
But for now, I can read it to him.
The takeaway here is: download it. Read it. Tell others. This booklet needs to be spread everywhere, like appleseeds, and take root all over the earth. Doctors’ offices, schools, places of busienss, libraries, hospitals, supermarkets. Write it on the doorposts of thine house and upon thy gates. We are here we are here we are here.
And as Nat would say, “It’s a-different, that’s okay.”
“Dispel the darkness around us wretches. Take us for real people. Don’t sideline us.” –Tracy Thresher, “Wretches and Jabberers”
The other night I had the opportunity to bring my 24 year old autistic son Nat to a dinner with Tracy Thresher and Larry Bissonnette, the stars of the documentary “Wretches and Jabberers,” directed by Gerardine Wurzburg. The film was the kickoff movie for an event called “ReelAbilities,” a mini film festival running January 31 – February 6, under the aegis of the Boston Jewish Film Festival. ReelAbilities is dedicated to showing movies that have disability as a central aspect of the film. I did not figure out until much later that the terms “Wretches and Jabberers” refer to two groups of people: autistics who do not communicate verbally, and non-autistics who do. To the non-autistic talkative folks, non-verbal autistics seem misfortunate and pitiable in their silence — poor wretches. But to the autistics, the talkers seem to be jabbering non-stop.
Tracy and Larry are two middle-aged autistic men who grew up unable to speak and were thought to be completely unintelligent. Being unable to speak but hearing conversation all around you can be one of the most frustrating situations a human can bear. Whether you understand others’ words or not — and I believe that Tracy and Larry did understand a great deal of what was being said by others all their lives — you know that something is going on without you. I am a very talkative person, a jabberer many might say, and yet I feel that I can relate to this stomach-knotting feeling of being left out. I remember being in first grade and learning the concept of “dozens” and not grasping it, while the rest of the class did. The teacher got more and more animated as she realized “everyone” got it, and I had a terrible pang, a fear, I guess, that I was being left behind. Psychologists tell us — and it is no stretch to believe this — that the feeling of abandonment is the most primal fear. A child will do anything to stay alive, and will cling to the most destructive people and behaviors if it will get them any attention. Attention means you exist to someone else.
It is no wonder that many people with autism develop “behaviors” that can be anti-social, disruptive, aggressive, even. Wouldn’t you, if you could not express yourself but there you were, a full human in all of your red-blooded need, being ignored, ridiculed, pushed around, babied? If even the best people in your life, who loved you, did not talk to you in a way that you could respond, how would you cope?
A wretched state, yes. But it need not be so. The American Disability Rights movement which began in the 1960′s largely under the Kennedys’ benevolent power eventually led to the ADA (Americans with Disabilites Act) and then the IDEA (Individuals with Disabilties Education Act) and suddenly the formerly institutionalized and marginalized and infantilized and ostracized disabled were let out of facilities and into public schools. In the movie, Larry says that he was put in an institution at some point in his childhood, and he wondered what he had done wrong.
Just like the segregation of the blacks in the US, integration and inclusion was met with a lot of ignorance and other mean and nasty shit, but eventually society started to relent and include, and to accommodate the disabled students. Resignation and exposure leads eventually to familiarity and comfort, and we finally got to the 1990′s where we actually had bonafide programs in public schools for people with developmental and other disabilities. Most recently, we have autism education.
Which has brought us to the 21st century, the Age of Technology in Schools, which has led to typing as a form of communication. My son Nat missed that boat but is catching up now, but slowly. He communicates through email and Facebook, but it is fairly rote conversation and not all that frequent. We have to do better by Nat.
Larry and Tracy, from the movie, learned to type when they were in their 20′s. What started out as rote, superficial communication deepened over time to deeper and natural conversations — all through communication devices like the iPad. Both men are tremendously aware of the power typing has given them. In the movie, Tracy said, “I am more than anything [that you know]. Think what it would be like to not be able to talk and have to depend on whether people think you are intelligent and then remember these brave souls in front of you today.”
Now Larry and Tracy travel the world, meeting with other self-advocates who are trying to express their thoughts through typing, and trying to educate the jabberers to stop and wait and read what is being said to them.
It is very difficult for jabberers to stop and wait for a wretch to compose and then hammer out his words with one finger. Tracy in particular seemed to enjoy typing, moving his entire arm with every letter, and ending each sentence with a double-tap on the period, a lovely flourish that said, “Now I have spoken. Your move.” It takes a long time, and during the Q & A several audience members gave up while Larry continued at some length expressing his thoughts on how art and typing work together for him. (Larry is an artist, who uses Van Gogh-like swirling thick paint and photographs and writing together on canvas. Larry’s art has been exhibited in various places: a local Vermont gallery and coffee house, the Bennington Museum’s “More Like You than Not” exhibit in April 2013, as well as in Phoenix for a fundraiser, “The Art of Autism,” in April 2013. He also had a solo exhibit called “This was me–” old style portraits, Larry called them.) We mouth-users are going to have to get better at sitting still once the gigantic Spectrum of wretches start to demand that we listen to their typing.
At one point during the Q&A, Tracy typed,“Larry, Putting our typing out to the world is pretty powerful isn’t it?”
And Larry replied, “Pictorial representations brings you a cheeseburger. Typing, let’s you create a menu.”
• • •
I loved the film and spending time with Larry and Tracy. Larry talks more but it is hard to tell what he is saying. He also draws in the air with his index finger, as if he is already beginning another of his paintings. Tracy is far more silent, but his eyes take it all in and then he belts out an answer on his iPad. The best part of the evening for me was our dinner together, with several others from the Film Festival, Tracy and Larry’s caregivers Harvey and Pascal, as well as my husband Ned and Nat’s caregiver John. At the beginning of dinner, Tracy typed “Please that we are all able to meet and break bread together. Hi Nat nice to meet you.” Nat read this out loud. I wondered what he was thinking. I had told him the two men had autism like he did and that they type to talk, like he does on Facebook.
We had burritos and salad. Nat and Larry both unrolled theirs and ate the contents loose on their plates. I told Tracy, who seemed eager to talk to us (Larry was a bit more prickly about engaging directly) that Nat was beginning to type but that I did not know how to help him make the leap to his own self-generated conversation. He can type tidbits of original thought, but he often resorts to scripts because I’m sure they are easier for him to use. Or maybe he’s afraid of saying the wrong thing. I don’t know, I wish I did.
At dinner Tracy told me that it took years for him to be this fluent, and that Nat should keep practicing. That was pretty much the only serious discussion we had. The rest of the time the guys were joking around.
Someone asked, “Where did you get your sense of humor from, Larry?”
“having autism,” Larry replied.
Then Tracy added, “I taught Larry everything funny.”
Larry said, “Eeeh,” out loud and then typed: “kind of reverse.”
At one point Tracy talked about how he’d gone out on a date with Henna, a self-advocate redhead autistic woman from Finland, who is in the movie, too. He did not want to say much about it. “Well, you’re a gentleman,” Ned said. Gentlemen do not discuss their dates, of course. But then I told Tracy about how I had tried to help Nat set up a date with a girl from his Special Olympics team, and that she had declined.
Tracy said, “Nat, There are lots of young women that swim on Facebook.” Nat read it out loud. He did not say anything, but maybe if he’d had his iPad, he would have. I’d like to see Nat set free the way Tracy and Larry have been by typing. I’m willing — eager, actually — to wait to hear what he’s got to say. I hope that by the time he says it, the world will stop jabbering so much and wait and listen.
• • •
Yesterday I climbed a mountain on a bike. I hired a guide, Brian from Santa Barbara Fitness Tours, and together we planned our trek. Brian was a young man in his late 20′s, slim, bearded, and sporting a colorful tattoo on his leg. He gave me several options — did we want to do a more technical route with some singletrack areas that would test my mountain biking skills? Or did we want something less technical but still unpaved, and in the wilderness up high? Or old equestrian trails in Montecito? I told him I wanted wilderness, challenging climbing, and some technical maneuvering.
The night before the ride I dreamed of nothing but riding, and of things going all wrong. I awoke early because clearly sleep was not being a friend. I couldn’t wait to start but I had 4 hours, so I took breakfast out on the beach and thought more about what to do. I knew what I wanted, but I did not know which of Brian’s options would be right.
I decided finally on Romero Canyon fire road, because there would be a gigantic climb: 1000 feet elevation in just three miles. My usual ride is probably a 90 foot gain in one mile, and that is often tough. But here I was in Santa Barbara, California, mountains everywhere, and ocean besides, and I was going to go up a mountain.
“The first half mile is the worst,” Brian said as we walked our bikes to the fire road gate. I looked ahead and I saw a lot of rocky scree, almost no smooth ground. It bumped and stretched and twisted and rose like a gigantic angry yellow snake. Still, I got on and started pedaling. It was so hard pushing the pedals, up and over the scree. Every few feet, though, I would feel the bike kind of stop, or I guess it was me, and I’d lean over the handlebars and breathe hard. We ended up walking the bikes about 20 yards up until we got to a slightly more level part. This I could navigate — but it was so steep I had to burn and burn my legs and lungs just to keep moving. I tried not to look ahead because there was just more and more of that rising dusty road.
Suddenly, a break, but unfortunately it was a slope down into a creek bed. “Your best bet is to splash right through,” Brian said. I could see that I would have to go as fast as possible down those rocks and through that water in order to make it back up the slope on the other side. I watched a couple go ahead of us, and then Brian, and then, well, me.
The plunge downward felt like when you’re a little kid and you jump from something way too high. You just leap and you wait as you come down, hoping but also knowing that you were not going to fall. I splashed and pedaled, and I got about halfway up and then tanked. Okay, yet another break for me. Still, I had done it.
Pedal, peh-dahl PEH-DAHHHHL, ARGH. Hack, hack went my gasping lungs. I was gulping in air but none of it felt like it was going into my lungs. Instead, there was a bubble growing in my throat, pressure that felt like rising vomit. Was I going to puke? On my bike? That was a new one. But Brian said, “No one I’ve ever taken has puked yet,” and that snapped me right out of it. Brian said I wouldn’t puke, and so I didn’t puke.
We just kept going up, and the road was beginning to both reach up and curve back and forth, hugging the side of the mountain. Fairly quickly the side of the path became pretty sheer drops, with just some gray scratchy brush as a border. When we reached a kind of cement bridge, Brian said, “Okay, that was the worst of it. From now on it is going to be a lot more gradual, you’ll see.”
I hoped so. I just kept gasping. I thought the whole state could hear me breathing. I felt embarrassed by my needy lungs. I wondered if I could really keep doing this. I found myself thinking of childbirth, and how you suddenly pull within yourself to just get through a moment. You find it somewhere, your step to the next moment. You stay alive moment by moment, through the intense laboring of your body.
It occurred to me that I could turn around but that thought lacerated me. No. I wanted to get up there so badly. This is what it is about. This is it, my joy. My highest height. I wanted to really mountain bike, not just ride through woods and up the hills near Boston, where I live. I wanted mountains, solitude, silence — and me.
But it hurt so much. And yet, after a while more, I noticed that I was actually pushing hard but not horribly hard. We could even chat a little. “See, some people think at first, ‘Oh, it’s just the placebo of finishing a really hard part,” Brian said, “But it really does get easier at this point.” We stopped for a photo and a breath by a large rock he called Pensive Rock, and he told me to look back at where we’d come. It was so far back, in just a few minutes! The entire Montecito Golf Club was a small flat green rectangle set into the lower mountain.
Brian’s first major landmark was just after we’d done 1,000 feet: two large power lines. This was after about 2.5 miles of climbing. We dismounted and took pictures and he joked about how he sometimes does chin-ups on the bars of the tower. Ha ha. But I’m sure he was not joking. He was young, strong, happy, and on the top of the world, more or less.
But I was with him. I was feeling breathless at this point but in a good way. So proud. In awe of the view, the gentle gray-green of the tree line that fell away beneath us, almost like receding waves. The light metallic purple of the ocean beyond. Purple ocean’s majesty.
We did just a little more, because I wanted the challenge of singletrack riding. “Try to look only at the road ahead, like 20 feet ahead,” Brian coached. That was good advice. Looking only ahead focuses you so that you only plan and you do not look at what’s right under you. You look, you decode the obstacles, you hang on. At this point my tendonitis in my forearm was feeling ominously tight. I knew I was tired but I also felt the crackle of excitement around me so — why not? But the narrow road, the close cliff, and the new boulder-studded path was why not. I stood still to catch a break and just like that, I fell over onto the rocks. A standing fall. I knew this meant I was too tired to do more.
We turned around. Going down the fire road took maybe 15 minutes. The ride down was tough in a different way, the navigating of the road surface through the high speed, trying not to shoot over the edge of the cliff. For the most part, it was okay to ride in the smooth parts right at the side of the mountain, away from the edge. But sometimes the better choice of road was closer to the edge. At those times I opted for the center, to basically bounce right over the rocks. Most of the time this was fine, but you have to be careful when you feather brakes on rocky surfaces; you could end up spinning out your back tire. This happened but only in a minor way. I mostly just kept hurtling downwards, until we finally came to the “chossy” part at the beginning (chossy is a word from 4-wheeling, and it means chossy). I had to do a lot of sharp, tight steering, braking, looking ahead, and quickly planning, but suddenly the road was too fast for my brain, and I crashed. However, I was still standing, so it did not count as a fall.
And it was over. We were back on paved ground, among people, cars, and houses. I had to come down, and get into my life on land again. I was no longer high in the mountains. But — I was still way up high.
I just finished reading Rachel Simon’s The Story of Beautiful Girl, about Lynnie, a young woman with intellectual disabilities who is an inmate in an institution for the “feeble minded,” in the 1970′s, and Homan, a deaf African American older man — also from the institution — who loves her. At the start of the book Lynnie and Homan have run away so that Lynnie could have her baby — a secret they’ve kept from the institution people.The book chronicles their lives through time in the context of Pre-Inclusion America.
I cannot praise Ms. Simon enough for this tour de force. I have not loved a book like this in so long! This is one of those books where you just wish it was not over. The story is riveting and so moving, and really opened my eyes (even more) to the treatment of those with disabilities then and now. There was a great attention to detail, in all the main characters, but especially Homan and Lynnie. They were believable and lovable. They also grew over time, as did other characters — and in a credible way. Simon also did her research in terms of creating the feel and historical background of the period of institutionalization. A humane, loving, and absorbing book, start to finish. Buy Beautiful Girl, read it, love it!
I wrote this more than ten years ago, and it can be found in my first book, Making Peace With Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts. (Trumpeter/Shambhala 2005 and 2006) I am posting it today because it still rings true for me, more or less.
From Making Peace With Autism, Epilogue:
I still find myself wondering, during my dark times, What if Nat woke up one morning to find that he wasn’t autistic any longer? I see us all, gathered around his bed, the site of the miracle, eagerly listening to his every word. He speaks so clearly now, in full, effortless sentences. At last, we understand everything. It’s as if he has woken up from a coma, or a deep, enchanted sleep. He will have to catch up for all the lost time.
We tell him, “And then you did . . . .Why was that?” We have so many questions for him, as he does for us. And now he can tell us all his secrets: “Oh, I hated it when you would try to make me talk to you.”
“Because your words came at me too fast. If anything else was going on, I couldn’t pay attention to whatever you were saying to me. The noise in a room overpowered everything else.”
“What were you saying with the silly talk? What was ‘Feem–sh?’”
“‘Feem’ just made me feel good. It was my word. Because you didn’t know what it meant, you couldn’t talk to me about it or make me talk about it. And ‘ssh’was just that,‘ssh.’ I loved the feel of ‘ssh.’ I loved when people got quiet.”
“Why did you hit? Why did you pinch?”
“I don’t know. I think that with the pinching,my fingers got carried away. It feels good to squeeze. And once I hit, it’s hard to stop.”
And then I have to ask the most important question, “Do you love us?”
“Yeah, but it’s hard understanding all of your emotions.You can laugh, then cry, then sing, all in the same hour. How can
you change moods so fast?”
“Maybe now you’ll see,”Ned says.“What do you want to do now, Nat?”
“I want to meet some girls.”
I wish for a miracle like this so badly that when I really think about it, I can barely breathe. So I close my eyes and let it pass through me. And the more I think about it, the more I come to realize that there are not many fifteen-year-old boys, autistic or not, who actually talk that way to their mothers. Anyway, I do know Nat. I know why he does what he does, the “feem,” the pinching, all of it. All in all, as my father once said, he’s still our Nat.
So I drop my miracle fantasy and open my eyes and go looking for him. There he is, pacing back and forth, living room, hallway, dining room,waiting for his video to rewind, his loud steps reverberating through the house, his hand opening and closing in time with the cadence of his soft silly talk. He notices me immediately, but he keeps moving, probably hoping I will not disturb his comfortable rhythm.
“Hold it, Nat,” I say, stopping him between rooms.
He turns and fixes on me with his wide blue eyes, waiting, silent now. He’s taller than I am these days, but his hair is still bright blond, the same as it was when he was a baby. I say,“I just want a hug.”
Immediately, he leans in toward me, “OK, yes,” he says, so softly it is almost imperceptible.
I kiss his cheek and breathe him in. His long arms are gingerly draped around me, bony and warm.We stand together for a moment, just like that, and my pain recedes, carried away with the tide.
Tonight I attended a debut of the John Block documentary for Autism Speaks, “Sounding the Alarm.” Mass General Lurie Center for Autism hosted. The film was mostly what I expected — a combination of scientists with findings or inquiries, sometimes frightening, sometimes heartening, folded in with examples of families (very difficultly) living with autism, mixed in with Suzanne, Bob, or Katie Wright expressing their own perspective and goals. The movie began and ended with Suzanne, giving the emotional grandmother’s view, sincerely articulating her pain and her hopes for Christian, her grandson. Katie illustrated the mother’s side — articulately, beautifully, and stirring my tears more than once.
I did not, however, expect to be so pleasantly surprised by Bob Wright — I assumed he was going to go for the same emotional tone as his wife and his daughter, (and I am not judging that). But frequently when he spoke, he would be discussing something that had me nodding my head in agreement or at least feeling like he was making a legitimate point. Most of what he talked about is what needs to be done legislatively and in terms of access to healthcare, which is true. He grounded most of his talking points in the most scary kinds of statistics and the most mainstream recommendations, such as when he said, “If you act quickly, there’s like a 50% probability that the child can matriculate from a public HS…” Here he was making the argument for early intervention — who could argue with that — but unfortunately most of his knowledge there was based on ABA as opposed to any other kinds of educational approaches. (cont.)
My digression into a critique on autism techniques and educational approaches:
I’m not against ABA, it has its place, but only if the reinforcement is positive and if the practitioners are respectful of the student. It bothered me, however, that so often the teachers in the film were shown speaking loudly for the child’s attention, redirecting hands-on, while the child sat in a brightly lit room with Meyer-Johnson like symbolic picture cards everywhere.
I think that in Autism 101, educators and anyone working with an autistic person should check for overly bright lights, florescent flickering, jarring contrasts, loud tones of voice before they even begin. They should keep a stash of light colored sunglasses for kids to try out to help shield them from distracting or overstimulating glare from paper or from letters on paper, and for stupid florescent light bulbs. There should be carpeting, perhaps, but only if it is hypoallergenic. Check for weird smells in the room, too. And maybe even consider whether this child requires symbolic pictures at all, or perhaps simply photos of things would do? If an autistic person has difficulty generalizing, why do we want him thinking that people are supposed to be stick figures? Furthermore, the educators in the film by and large seemed not at all interested in figuring out why the child was distracted or not willing to look. I’d like to see more respect paid to sensory issues like eye contact being painful, or finding out why the kid has his hands over his ears? Maybe he should not be approached directly or have a hug demanded of him. My point is, no wonder so many of the children shown in the film were upset; as well-meaning and loving as the parents and staff were, they might have been missing some very important cues from the child. Let the kid chew on stuff if it helps with sensory organization.
Also: consider floortime, and other approaches that aim at connecting with the student from where he is. Don’t be Ableist, don’t assume you have all the answers. Even though you are educated and seasoned in the world, you still have a unique individual in front of you. Respect that.
For God’s sake, this is a neurologically different person, there is no fixing that. Just find ways to connect and work with him.
For me, if all else fails, I ask myself, “What would Nat think of this?”
(Back to Bob Wright and the movie): What I liked best about Bob Wright was his insistence that we engage our legislators in terms of insurance equity for autism treatments and therapies. He said, “The thing that so upsets me is that half the population has coverage through corporations and yet Congress has failed to act on the large corporations or for their own employees in terms of insurance. Congress has yet to move on this issue.” I also liked the way he emphasized the black hole that opens up when many of our guys turn 22 and have to leave school. The film showed Bob testifying in front of Congressmen a number of times, to his credit.
I don’t have notes on who quoted this Harvard study finding, “Lifetime societal cost is 3.2 million per person if they don’t get the treatment they need.” They did not qualify what sorts of challenges each 3.2 million dollar person is facing — are we to assume that every single person on the Spectrum would cost this much to support? That can’t be accurate. This is a typical Autism Speaks strategy, to use numeric data to scare people into taking notice. There’s some truth, in that we definitely do need funding to educate, job train, teach ADL’s to, and support people with disabilities, but there’s a lot of hyperbole, too.
This is not to say that they are wrong. For many many families dealing with autism, they are right: it is a lot of money to buy respite care, therapy, one-to-one ABA for 30-40 hours a week. It is heartbreaking watching a child regress, as Christian Wright apparently did. By 19 months he had lost most of his skills, according to Bob. This certainly is tragic; I do not blame them one bit for expressing their agony and I give them a lot of credit for turning that despair into a multi-million dollar organization that does indeed do a lot of good. In 2013 alone the AS budget for family services was $8million. Sure, I’d like to see that tripled for services but I’m not a Wright. I’m not Wrong either, though.
Later on during the q&A I did make the request that they shift even more of their huge pot to services and housing for adults; after all, the film quoted that 500,000 people would be aging out of the schools in the next ten years. 50,000 a year, in need of supports and jobs. Not to mention housing. So, yes, I think AS is top-heavy in their emphasis on research rather than family services. But I did not found the organization, so I don’t get a vote. And yes, AS spends something like 40% of their revenue on raising awareness with efforts like this movie; but that’s how they make all the money that they then do a lot of good with. I merely urged them to do even more in the supports and services arena.
The worst thing in the movie was the mom who said that she could not trust her son to strangers because “Most days I want to kill him. And I love him. How is someone else going to have the patience?” This is the kind of lurid language that Autism Speaks will use to get donor’s and the public’s attention, but it is very damaging to say this. A lot of people hear this as a way of condoning violence towards autistic people. I know this mom did not mean it that way, but given the violence against autistics in the press lately, it is insensitive if not monstrous and outrageously irresponsible for them to have left that bit in the film. On another level, it is disrespectful to her son to be spoken of in this way.
Okay, well, people have the right to talk about how difficult their kids are. But how about praising all the stuff they can do? There was only one part of the film that showed autistic people succeeding and happy: when they talked about employment. The film showed Andrew D’Eri, a father in Florida who opened a car wash with 35 autistic adults who make up 85% of the staff. His business is thriving. “That makes me feel happy,” he said. Guys like D’Eri make it look easy and natural to just do it, but we all know that starting a business is anything but simple. Several of the autistic workers were asked what they liked about the job, and here are some of their answers:
“Can’t beat the hours, the money”
“Making new friends”
“I was excited when I got the job”
“If I wasn’t working here I’d be sitting at home… I’ve applied to so many jobs and they won’t hire me.”
That last quote had me by the throat. I think the film and maybe even Autism Speaks would be even more successful at getting people’s attention if they were to show more of this positive stuff happening. Isn’t it true that you catch more flies with honey than vinegar? I think that if Autism Speaks could shift out of the catastrophe talk — but not invalidate the parents’ suffering — and move into the success stories, they would have more support in the entire autism community.
So maybe it’s time to evolve out of Alarm and Awareness, and move to Support and Success.
• • •
Here is my latest Cognoscenti column, about the rift in the autism community that can be loosely characterized as being between autism parents and self advocates, or, Autism Speaks vs. Autistic Self Advocacy Network.
I’ve just finished a total of 4 hours interviewing Kate, an autistic woman that I went to college with!! We were roommates for one year. I did not know she was autistic back then, and I was not nice to her back then. In my defense, I was 18 and sheltered. But there is no excuse for unkindness.
Life changes us, right? Things happen. I had my first child and I had to relearn everything I knew about people, about myself. I find, however, that I am still making assumptions and acting on these assumptions about autism. Faulty assumptions. Even my ambivalence about Nat’s stims or his quiet. Kate is showing me that there is value in everyone. It is up to us to discover it.
There is so much room and need for more growth on my part. When I’m having a good day, I can work towards this with my writing. I am trying to make myself a better person than I used to be. I write stuff down so that I can know it better. Maybe some of you learn from it, too. But my first goal is to help Nat and me live better lives.
And so this former college roommate of mine comes along and gives me this gift. She does not seem to hold it against me, the way I was closed to her and not helpful. Even though so many in her life have been this way, she goes on with a sense of humor and deep insight and keeps trying. It is just beyond wonderful that she can now talk about her experiences and we can reconnect in a positive way.
She is helping me with the book, and with becoming a better person. Kate gives me hope that people can continue to grow and evolve (I am referring to Nat, me, and Kate herself). If there’s love and kindness, so much is possible.
Is it splitting hairs to debate what we mean by “autism?” The other night I was at a party where there were many people with autism, and the conversation was around the demonization of autism. The whole thing began with a friend asking me to take a stand on Autism Speaks. I told her that I have some very good friends who work for Autism Speaks. I also have some dear friends who hate Autism Speaks. I have been in both camps. I was on an Autism Speaks subcommittee for a short time, and so back then I thought AS was doing a few good things. Before that, and since, I have heard far more criticisms of AS than positive comments. Mostly I hear that Autism Speaks, primarily Suzanne Wright, the AS co-founder, make some very devastating remarks about autism and completely refuse to see the richer complexity that is autism. She only sees the bad and difficult. She makes no room for the good, the interesting, the difference given to us by autism. The Autism Speaks anti-autism mantra is mostly polarizing and not at all productive. Particularly when we hear that only the tiniest percentage of their take goes to helping people with autism…
What is the complexity I’m referring to? I am going to describe this dichotomy without judgment. My basic (oversimplified) explanation is about the rift between autism parents and autistics themselves. First of all, I need to say that they are often one and the same. You can be both. Perhaps more often than not, autism parents are autistic themselves. But that’s just one point here. The rift is not about that, it’s about recognizing the difficult — sometimes soul-sucking — aspects of caring for an autistic person who has many challenging needs. Usually, autism parents will mean things like their autistic child wears diapers way beyond the usual age, or that they smear feces, or that they are aggressive, or that they are completely out of it, unable to communicate. These parents’ lives are hard and sometimes full of despair. Their autistic children’s lives might be as well — if they are aggressive it is because they are trying to communicate something important, like they are in pain, sick, frustrated, uncomfortably overstimulated, and other reasons that bear exploration.
The autistic adults who can communicate often tell me that yes, they have a disability. More often, though, they describe themselves as having a difference. They use the word “difference” because it does not have the negative baggage of the word disability. It has no implication of disease, illness, or of something being wrong. They do not deny that some parents of autistics have a lot of difficult and painful stuff to deal with in caring for their children. But they deny that this is what autism is.
If you begin to see autism as a neurological difference, rather than a harmful disgusting disability, you start to feel proud of your autism. Or at least accepting of it. Or perhaps you would feel proud if society, Autism Speaks, and the DSM would let you! It’s as if the word has been ruined by society — people like Suzanne Wright — lumping aspects of autism – sensory overload, communication trouble, social deficits — with aspects that can be experienced around autism (like resorting to aggression or fecal smearing or cognitive delay). The autistic adults I have spoken to often feel that it is autism that gives them particular skills, talents, insights that other non-autistics do not have. They say that the difficulties in their lives due to autism are the things they want to change. But they do not blame autism in general. I think people use the words “co-morbid symptoms of autism” in this case.
What’s happening here is not hair-splitting. It is separating out very carefully the aspects of having autism are the parts we would like to improve. But the difference aspects of autism are the parts we should not dismiss, and in many cases, we should illuminate, explore, and honor.
It is true — I hope it is true — that most parents work hard to get their children what they need. But do we sometimes shoot ourselves in the foot with our high standards? I’ve wondered about this for a long time. Back when Nat was still in school and I was a co-chair of the SEPAC (Special Education Parents Advisory Council), I heard a lot from parents about how the supports just weren’t “good enough.” Their child was not progressing the way they thought he should. All the parents nod, understanding, because we, too have often felt that the schools were strapped by the budget and so they could not provide enough of a given service: (ABA in the home, one-to-one with a classroom aide, a particular curriculum, etc.) Because of this mediocre reality, our special needs kids do not evolve to their fullest potential and we wring our hands about it. Rightly so, because we love them and we are their best advocates.
But — we also learn at some point that nothing is perfect, and that we have to negotiate, prioritize, and compromise. In Nat’s case, our school system was generous enough to send him to a very good private ABA school, and I never had to fight for that. But there were several things wrong with this: First, the private school could be very rigid and not always able to do just what he needed, but rather, they would follow their behaviorist dogma instead. Or they were too risk-averse to try something new that I just knew he could do. And finally, I live in a town with an excellent school system and a beautiful neighborhood school where both my younger sons went, and I wanted Nat included. I wanted the school to do whatever it needed to do to make it possible for Nat to go there, but they would not. And I did not want to go to court, and I was happy enough with the private program — it had many good points, too — and so I allowed Nat to follow that particular route.
Nat’s current Day Rehabilitation Program is not necessarily an ideal way for Nat to spend Tuesdays and Thursdays (the days he does not work at the supermarket). In the Day Hab there does seem to be a lot of chaos from all the other developmentally delayed and autistic clients. The whole Day Hab experience is one of fairly low expectations and not a whole lot accomplished. The staffing is sparse. The clients hang out, sit on physio balls, practice posture, do puzzles, work on the computer, work out on the stationary bike. They go out to the nearby park, they go to the Y, they swim. They bring lunch and eat it together in the mall.
You could look at this and say, “I don’t want my adult loved one spending his day like that. So unproductive. Such a big ratio, not enough real attention. How can anyone learn anything that way?” Well, maybe you’re right. But if you take another look, you might not feel that way. For one thing, with ratios of 1:7, your guy has to learn how to get his needs met. He needs to navigate all those other clients, he needs to pay attention, he needs to be able to get the staff’s attention. These are survival skills. That’s not so terrible a thing to spend your afternoon on. Nat works three days a week, and so he has only two days in the chaos of Day Hab, but you could look at his job and say that all he does is walk around a parking lot. But we say that he has a great job, he gets paid minimum wage like any other worker. He has to perform a certain way or he will be fired.
I know of parents of guys like Nat who take them out of the day programs because they don’t want them to work a job that’s beneath them — like cleaning, for example. Others don’t want their guys in a group home like Nat’s because everyone is so “low functioning” and so what would he learn? Those parents believe that there always have to be higher-functioning role models. But what does that mean? What if the other peers can read or talk but they are unfriendly? What if the other peer cannot talk but he makes your guy laugh?
We all have to think about what are our goals for our children and help them get there. We have to fight for the best services. But we also have to be realistic. And, more than anything, we have to try to look at what is given sometimes in a new way. When I start to get dejected about Nat’s life, Ned points this out to me. He reminds me that the average Joe comes home from a job that probably is not the most stimulating thing ever, and he grabs a beer and turns on the TV. Or the average Jane who comes home and surfs the net all night. We spend hours doing all sorts of “unproductive” stuff. We hang out with people who maybe don’t help us grow, but we hang with them anyway.
Life isn’t always about striving to be the best, have the best, do the best. Sometimes we just have to make the best out of what we have.