Susan's Blog

Sunday, April 29, 2012

A Sense of Happy Purpose

Driving away from Nat’s house today, I was unaware that I was happy. It only occurred to me later in Home Depot (getting mulch with Ned) that I didn’t feel the way I have sometimes felt in the past after dropping Nat off. The bad feeling is a little bit of the emptied-stomach grip you get with fear. Empty stomach, cry in the back of the throat, smile pasted on because I’m trying. I didn’t feel any of that today.

All day I’ve been trying to figure out why. Certainly this is not the first time I felt happy there. The house itself is a happy space. I don’t know why. I didn’t buy it; the other mom did. I helped decorate it, but this is more than bold-colored furniture. It isn’t even the style of house I like and there’s some ugly fake wood on the inside of the front door. Clearly this is not about looks.

Whatever light there is streams into the front of the house.  It’s like a sunshine sponge, airy and light, sweet and full. Along the southern wall is a typical suburban living room picture window. The floors are bare, new oak that also reflect light, and the walls are a creamy yellow so everything is airy gold. Somehow it seems like every time I’m there the sun is out.

But I don’t always feel happy there, nevertheless. Sometimes there is an unsettled feeling, like no one knows quite what to do. One roommate walks around slowly and looks puzzled a lot. He asks the same questions frequently. He asks me which kind of hug he can give me (it’s always the same: a friend hug, which is side-by-side, arm across the shoulder.) The other roommate bounces here and there, ricocheting off the walls. Nat does his fast walking from his room into the living room and back, and his eyes look too big.  The caregiver stands in the middle of it all, calmly talking to us (Ned and I nearly always go together, which helps).  But maybe it felt like too many planets orbiting, and anyone who reads my blog knows that I hate orbit. It is too lonely.

Today the caregiver had a plan that really sounded like a plan. Kite-flying day in a nearby park, with an autism group. So, a non-judgmental outdoor activity with a lot of people.  A radiant day, and Nat looking very purposeful, very ready for us to leave.  When Nat wants people to leave, it doesn’t mean he doesn’t want to be with you. It means that the next thing that happens is on deck and that didn’t include you so you should no longer be there so that the next thing happens the way it is supposed to happen. For so much of Nat’s life, perhaps his greatest happiness is to know what comes next and then for it to happen so that the next thing can happen, too. I used to draw up calendars for him, perhaps 6 weeks at a time (whatever would fit on a piece of paper), and most of the calendar would say: “school, school, school, school, school. No school, no school.” And then the next week would be the same, with occasional appointments and events interrupting the flow. This is how Nat developed an understanding of time, of how weeks work.  I used to sit down with him, whenever I’d made a new calendar, and read it out loud to him. More than once. Then the calendar would end and I would wonder if he could just go on and on, to the end of time and remind me: “After life, death!”

I wanted to leave, and get onto my next thing. And I felt like Nat did, too. That may have been it: we both had plans.  No, not really plans. Just Sunday sunshine stuff to do.  I wanted to leave, and get onto the next thing.  And all my stomach felt was hunger, real hunger (I’d just had a 14.7 mile bike ride) — no sad fear.  I felt scrubbed out like a big white bowl, fresh from the dishwasher. I was thinking vaguely that after this Ned and I would find a place with sandwiches and just eat them outside somewhere.

So maybe this warm sense of regularity was baking in the bright living room air, like almost-ready cookies, giving us all a sense of anticipation for what’s next, even if it meant that we were not going to enjoy it together.  Not like lonely planets in orbit, but like bright white stars forming constellations.

Thursday, April 26, 2012

Fight for your children

When I was a little girl, I had gerbils for pets. Queen Victoria and Prince Albert. The times that the Queen gave birth were so exciting. It seemed like on every holiday, actually, there’d be a new litter: 5 naked pink gerblets, mashed together like  fingertips. But there was a danger: the weak ones could be eaten by the parents. “It’s nature,” Mom and Dad would say. “Ew!” Laura and I would say, fascinated. How could a mother eat her baby? Kill her baby? But sometimes, horribly, they do.

We always hear about the law of the jungle, and survival of the fittest, as if that is the way of all things. And in many ways nature is like that. And this provides some with justification for not helping the needy. Worse, this belief allows some to believe that the needy — the weak, the “damaged,” the non-normal — get what nature intends. What they deserve.

This is the most primitive of beliefs, since it comes from animals. But if you think about it, even animals themselves don’t always kill the vulnerable. There are stories of animal friendships, Mowgli-like tales where one species nurtures another, where wolves and dogs look out for humans, where gorillas adopt kittens. Mythical stories like Tarzan, and Androcles. It is not the way of the world, then, if there are memorable examples of other ways.

Every religion admonishes us to take care of each other, too. Why is it so easy, then, for us to forget? I just spent two days in Washington, DC with a ton of other disability advocates as well as CCCAID, the organization I’m working for as Director of Autism Adult Services and Outreach. I met with staff from six different Senators and Representatives offices, all to discuss the need to maintain supports, lifelines really, for people with disabilities.

I talked a lot about the ABLE Act, which is legislation that would allow for families to save money for their disabled children in adulthood, so that they would not lose benefits like Medicaid and SSI. Why shouldn’t we be able to save for our needy children when we save for the non-disabled ones? We take aid for college as well as pay our own money for it. How is it that different for our more vulnerable children to take aid from the government — because statistically they will have a harder time than their non-disabled peers earning nearly enough money to survive — to supplement their needs?

But what’s the “pay for?” I kept hearing this from the aides. “How do we pay for it?”

“We are one of the wealthiest countries on earth,” said Senator Tom Harkin of Iowa, at a reception I attended Tuesday night. And I say we are the lions of the world. We have a fantastic, rich and bountiful country; we have power, wisdom, and the best form of government on this earth. We can take care of our young, and the young of others, regardless of their struggle. We’re not gerbils. Let’s be more like the elephant and the sheep. The bunny and the guinea pig. Koko and the kitten.

But some parents are so scared for their children. They don’t know how to protect them from the world. A world with no certainties, and the threat of disappearing safety nets. In many places there are no safety nets at all. In D.C. this weekend, one mother told me that she knows parents who hope that their children die when they do. They love their children deeply, and yet they hope this.  These are not the parents who kill their children, who drown them or imprison them in a flaming house. These are parents who have no faith, no hope.  They do not want to see their children suffer, and they think that when they go, their children will indeed suffer.

They are sad parents, despairing about the world. And they are so wrong. They have no right to decide that, not about their living children. But they do have the right to be angry. They should be angry. Not at their children, nor God, but at the selfish people who would cut their lifeline funding.

There is always hope.  But hope does not come easily. Unfortunately, just as we have had to work so hard to nourish and nurture our disabled children, we have to work just as hard to help them live adult lives. We can’t turn from that responsibility. And we have to work together to keep our hope and possibilities alive. Life takes work. Hard work. We can’t give up.

We cannot allow our elected officials tell us that programs like Medicaid and ABLE will be eliminated or not enacted because of money. That is cowardice, not prudence. It is not even conservatism; this is not about being careful and watchful of funds. This is about letting people founder. Not helping our fellow man. If we are talking about not funding and helping with those who are more difficult to manage, then we are essentially talking about dispensing with them. Don’t believe what the Tea Party says, about how paying lower taxes somehow restores America to its greatness. The truth is less glamorous, but nevertheless, it is the truth, that lower taxes = less money for supports for the disabled = saying we don’t care.  It is cruelty.

The answer is clear, but very difficult. It is dreary and arduous. It is about one person at a time, one vote at a time, one phone call or email to Congress at a time. But we have to believe in the collective good, that there is power in that, but we all have to do our share.

 

Tuesday, April 17, 2012

Facing our DIScomfort

I don’t want to scare you or make you nauseous. But I’m going to go into the rabbit hole tonight (I’m also watching The Matrix with Ben and Ned), and take you with me if you want.  I’m going to ask you to face your child’s adulthood.

In terms of nuts and bolts technical autism adulthood information, I do not believe I am the go-to source. That kind of knowledge is not my forte; I’m not a big details person. But I am talking to people who are, who have the sharp minds to pull apart the messy clumps of information about adulthood issues — primarily housing and day programs. I want to give a plug to the friend who helped me today, because even though I am not ready to use her info specifically, I owe her and her organization at least that. So click on Autism Housing Pathways and donate something, anything, right now, before you continue reading this. AHP is going to be one of the premier places to learn about housing models, for all sorts of people up and down the Spectrum. And learning about how to put together a home, how to leverage whatever resources you’ve got as well as the three building blocks: SSI, Medicaid, and Section 8.

Piecing together an adult life for your autistic child is not going to be easy, especially given shrinking budgets. But the thing to know is, you must face it. Now. Even if your child is 6. You think about college, you can think about this. Right now it doesn’t seem like much fun, but that’s because you’re thinking, “Ew, if it’s not college, what is it? A life of van travel and decrepit, shoestring day programs? Mall walking and group dinners out at Bugaboo Creek?

Well, yes, maybe, but also, no. I’ve said this before, but it bears repeating. You have to get past how it all looks. First of all, physical appearance is always deceiving. It’s true but it isn’t the whole truth. Nat does all those things. But he is happy doing those things. He is happy. So who am I to say it is not a good life? Because it may look, at times, pitiful?

There is no adult in the world who is as cute as a child. So it is with autistic adults and autistic children. At some point, all children stretch out and pad out into greasy awkward teens and slowly morph into crusty adults. It’s not always pretty. This is perhaps a metaphor for adult disability. It may be hard to look at adult disability at first. I’m sorry, that is a possible truth. It is how we are engineered in this day and age — to be smooth, sleek, symmetric, etc. Non-stim. All those Ableist things.

It’s not good, but it is a possible bias that is there within you and so the sooner you face this malaise, the sooner you can get over it. The ugliness is within us, and it is not our disabled children at all.

So once you know this, once you get past the strangeness, awkwardness, and all the other DIS kind of stuff, you just have a guy, a person that you need to get to know. Luckily, if this is your own child, you have not only gotten to know him, you love him, and so you are already past the awkwardness of all the DIS-related stuff.

I used to wish that people could know Nat just the way I knew him so that they would not think his behavior, his presentation, was ugly. That’s why I started writing. It was pure Mother Selfishness. I wanted the world to love Nat, not revile him.

So let’s say you are more highly evolved than me, and you are past all of that stuff. So then what’s the problem with facing that they are going to be adults with lots of challenges? You already have that in their childhood. Is the problem that you have to face that they may not go to a traditional 4-year college, live alone, work 40 hours a week, have a family?

I’m asking because I’m so different now, I can’t even remember!

Yes, I can. I still feel sad driving away from Nat’s group home! Even though I had a big hand in creating it!

But for the most part it has become so easy to just face it and go full steam ahead.

You, my friend, must plan. You must face different scenarios. You must deal with it. Emotionally, financially (start saving now, not in his name, make a special needs trust fund), and informationally. Bite off whatever tiny chunks you can, chew them, let them digest, leave them for a bit.

Then come back to your meal.

On the most selfish level, the most difficult part of having a child with a disability might just be that you have to face your own non-existence. Who the hell wants to do that?

But — need I say it? You, wonderful, lovely, unique you, are not going to live forever! Argh. I hate that.  And your child as an adult will need support one way or another. That is just a part of what his life will be.  The sooner you understand that you can and will deal with it, bite by bite, the better equipped you will be for that eventuality. And that, dear reader, is the best way you can parent and love your child.

Saturday, April 14, 2012

Lonely Orbit

The ragman he draws circles

up and down the block

I’d ask him what the matter was

But I know that he don’t talk.

Bob Dylan

I come home and the street is covered with pale blue and pink drawings and signs. Big fat chalk stubs lie next to the curb in a pastel stupor. There are tons of powder-faced little kids in the street, balls bouncing, plastic scooters fallen over, and some of the kids I think I don’t know, and then I realize they are the neighbors’ babies, but now they are little people on legs. They’re drawing with chalk on the street, just like Max and Ben used to do. Selling cloudy lemonade and colored rocks. I am so old, I’m standing there in high-heeled boots and a handbag, while everyone else is in crocks and sneakers.

Nat is with us, walking back and forth, shaking his fist back and talking to himself. The baby, a neighbor’s kid, looks at him and says to my neighbor, “He’s funny.” And so it begins again, the long process of the next generation of children, understanding about Nat. I guess it’s human nature to notice what is out of place and talk about it. Or at least it is neurotypical human nature.

We had just gotten back from Nat’s house. Nat’s new roommate moved in today. We went to the house to have pizza with everyone and to bring Nat home for the night. I think it was a good idea to take Nat home and let him decompress; it’s a lot to suddenly have a new roommate and all the families there visiting. Plus Nat’s new roommate is extremely active, maybe even moreso than Nat. I think he and Nat will have a lot of fun together because they are so similar. They even eat pizza in a complementary way: Nat pulls off the cheese and eats the crust; his new roommate eats everything but the crust.

But Nat was very quiet. He and his caregiver had gone on a huge walk today, and he was worn out. I, of course, read into it, because I have been down lately, and so because I still haven’t detached completely from Nat, I assume he was, too. And maybe he was. Maybe he was mixed, because although his new roommate is great, it is a change.  I’d ask him what the matter was, but I know that he won’t talk.

But I don’t know. As I said, I’m in one of my phases where I feel outside of all my worlds, floating. I don’t know where I fit. I’m feeling like I’m orbiting around everyone else, except I feel connected to Nat, except that I don’t know if I’m right about him. Max is off having the time of his life. I am continually struggling with how much distance I’m supposed to give him. I’ve overthought it so much that nothing comes naturally.

Things are a lot more natural with Benj, because he is so forthright about his feelings. When I’m bugging him, you know it, he gives me a look or tells me. When he is feeling cuddly, he finds me. I wish the other two were like that. But right now Max and Nat are so apart from me that I feel almost done as a mother, and I don’t want to be done. Yes, often I love this new phase of life where I’m free. So free, I can ride my bike for 2 hours every day and still get all my work done. But I’m not happy today, or yesterday. I’m eating way too much, because there’s that empty pocket inside my gut. I don’t know how to fill it. Chocolate? A doggie? Ned and I went to look at dogs today, at the MSPCA, but I wanted all of them, not just one. So we came home with none.

Came home with our tall drink o water son, with the innocent eyes, more innocent than the boy-baby who pointed at him.

I tell myself this is just a feeling and it will pass, but I wish it would. I wish I was back down on earth again with the rest of the humans.  I’m over here, with my damned laptop, my addiction. So I look over at Ned and he says, “What, Susie?” as if all is well, as if all it is is that we’re just home in our livingroom while our sons live their lives, whatever they may be.

And kind of just like that I’m reeled in. For now, but now is good.

 

Thursday, April 12, 2012

The Contract With Our Children

What’s important? It is so easy to forget, and lose yourself in sadness, grief, and regret. Especially as a parent, which is the epitome of hope — your decision to have a child is your expression of faith in the goodness of life, your commitment to keep us all going.

So what happens when we have our kids? We get caught up in something external to the child, something tangential to the reason we gave birth in the first place. We start living through our kids, rather than watching his life unfold.

I had a conversation with a friend today on the train, we were both done teaching at the same time, and she told me about how she writes. She has a unique and fascinating book coming out at the end of the month, and so I get a lot out of talking to her — we have both been through similar experiences via publishing and writing. She told me that her book came alive when she let go of trying to write it a certain way, or for a certain audience. It just was there for her; she saw and heard the characters’ conversations as if they were real. I have experienced that, too. There is nothing like it, when your characters become real.

I’m thinking about what my friend said because it applies to loving our children. I think that when we let go of that script, that frame around them — of what they should be and what we deserve to get from their lives — we are suddenly with them. They are real in a way they never were before, because they are just being themselves, their glorious selves. We can let them be themselves and rejoice in that. I think that is the contract we make with God (yes, I believe in God, you may call it nature or something else, whatever it was that made you take that leap into creating life). The contract is that we will be given the chance to have a child, and we must love that child exquisitely: with nurturing, educating, developing, disciplining. Yes, even that. Boundaries help them know where they end and others begin.

Why am I saying all this? Because of my friend, I guess, but also because I know that I enjoy my children more when I am just with them, plunged in. When I do that with Nat, just exist with him, next to him, taking my cues from him — that is when the love is the strongest.

My State Rep and the Judge Rotenberg Center

No matter how you slice it, it does not make sense to use electric skin shocks on people to retrain them. Because if it is an effective technique, as the Judge Rotenberg Center in Canton, MA claims,  then why don’t we use it on proven violent criminals, too? Don’t we want them to learn how to behave in society? Don’t we want them to stop hurting people?

We would not use skin shocks on proven criminals because that would be considered “cruel and unusual punishment.” 

If we as a nation are not permitted to use aversive techniques to retrain, rehabilitate proven criminals (murderers, rapists, child molestors) then why can a school use such techniques as electric skin shocks to retrain children who are aggressive or self-injurious?

Huh? I’m confused.

No, I’m outraged.

A while back, I asked my State Rep Jeffrey Sanchez if he would help shut down the Judge Rotenberg Center in Canton, Mass, because JRC uses electric skin shocks to “treat” its autistic students who have severe problems with aggression. Rep. Sanchez replied that I can’t possibly know what it’s like… or he said something like that…

I absolutely can know what it’s like for my child to be aggressive and out of control. It is documented in my books, my blog, my heart. But my Nat had an excellent education and he learned how to communicate. He learned to understand how to tell others what he needed, how to reach out when he had to or wanted to.

All people can learn. It is up to us — society, parents, schools — to be patient and figure out how. Without pain, horror, and abuse. It may take years, but it can happen. This I know. There simply is no justification for torture. If you watch the video, you will witness a child being tortured, in our state, on our watch.

So here is my letter to Rep. Sanchez, because yesterday I viewed a video on ThAutcast, shown by FOX25, and long-suppressed by the JRC, of a child being skin-shocked. I don’t know if Sanchez still supports JRC’s methods. So I’m asking him to consider condemning them, helping to end their use of electric skin shocks and other aversive methods.

Dear Jeff,
As a constituent, and someone whose known you for years, I have to ask, to plead with you to please withdraw your support of the Judge Rotenberg School, if indeed you still do.  You once said to me, (I only remember what I perceived you said) “It’s the only thing that works for some of these kids,” or something like that.

Jeff, I know what it’s like. My son Nat has had serious bouts with aggression and out of control behavior. Scary stuff. But he learned. Even though severely impaired in terms of language, he learned.

All people with autism can learn, but it is up to society to figure out humane ways to teach them. There are cases where people with autism learn communication later in life (my own son, for example). Once people learn to communicate, whether verbally or typed or signed, or pointed, many of these difficult behaviors recede. This makes sense. If you can express what is bothering you, you can be helped.

Have you seen the video just released, of the JRC’s methods?  Take a look, but be prepared to be horrified. This just cannot be a school in Massachusetts, but it is!

Graphic video of teen being restrained, shocked played in court: MyFoxBOSTON.com

Schools must be supported to teach, using the many available and humane approaches, and not hurtful, abusive, or aversive ones. Skin shocks CANNOT be the answer. You have to draw the line somewhere.

As my state rep., I’m asking you, and as a prominent advocate in the autism community, I’m seriously putting it to you that you must consider withdrawing your support of this place, if you still do, and even with a personal connection you may have to it. Please, in the name of human decency.

If you already have withdrawn your support of JRC, then I thank you!

Thanks, Jeff.
Susan Senator

We will find out what Rep. Sanchez’ answer is and post it.

Saturday, April 7, 2012

Autism Adulthood: Lessons

The work and learning continues for all of you.

And if  your adult child has moved into a new living situation, here are some things to think about.

Lesson 1: Remember what is important

You have to keep your eye on the prize: your child’s wellbeing. How do you do that?

1) Concern yourself primarily with what your child did, is doing, or will do. Look at him. Talk to him. Hug him if you can. Be affectionate but also be respectful. Do your parent job by observing keenly, taking in any changes (positive or negative) and consciously noting them. Is he more active? Wide-eyed? Stimmy? Talkative? What is he talking about? What words and sounds are you hearing? Are they okay?

You have to look deep inside, to your wisest part: your instinct, and find the truth there, asking: Is he doing well?

2) In terms of your dealing with all the other people involved: keep your head above any squabbles — whether among the other families, the service providers, the staff — anything not directly about your child.Remember that in any workplace or group, there will be gossip, guessing, rumor, innuendo. Try not to engage. To discern the truth, if you really have to, ask the person who can most directly have knowledge of this bit of talk or who can most directly have an impact on it.

3) Frame complaints as questions, not accusations. Do this by assuming the best of each person; that will effect your outlook and your tone.

4) If you’re emailing staff or other parents, CC only one other person, just to keep it professional. Don’t CC the whole chain of command: that can appear threatening.

5) Always call before coming over. This is a home, and it is not yours.

6) Be friendly and interested in anything the staff or other families want to tell you. Always listen, to be certain that anything relating to your kid is going okay. But don’t listen too carefully to details that might be just unsettling gossip. Safety and wellbeing of your child: that’s what you need to know about.

7) Don’t be ready to jump ship as soon as anything unexpected or unpleasant happens. Remind yourself that this is a home, not a laboratory. Not a classroom. Things cannot be perfect, or even the way you dreamed. Things can only be real life and you have to decide what you will and will not accept. Decide on your non-negotiables and let the rest ride. You can always wait a day and deal with something non-dangerous at another point in time. Check in with your child in whatever way you can to assess the reality.

For me, the bottom line is Nat’s safety and happiness/contentment. He might be more anxious than we’d like, but it is a new, stressful situation. That’s the reality. His staff are good people, well-trained, and caring. That’s another fact. His parents are highly involved, loving, but very intense. That’s true, and it’s okay.

Nat will live through his current anxiety. Like all of us, it is good for our children to experience living through difficulty and struggle. In a group home situation, the more we can step back and see each person’s reality and keep focused on what’s important — the child’s wellbeing — then we can let go of the little things and breathe easy.

 

Super(market) Nat

I had a piece published in Lisa Belkin’s column at The Huffington Post today:

Susan Senator

Author, Making Peace With Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts

A Child With Autism, And A First Job

Posted: 04/ 6/2012 12:33 pm

 

I went to the supermarket the other day and on my way out to my car I saw a young employee walking eagerly towards a stray shopping cart. He caught my attention because his stride was a little too coltish; his smile was a little too giddy. He was “one of ours,” as my husband Ned likes to say with fondness when we spot someone who’s probably autistic — like our son, Nat.

My son Nat is severely autistic, and even though he is 22, I still get a little frisson of pride mixed with fear when I am out with him. Fear because of all the times over the years that he has erupted in public, angry and scary, over something I couldn’t control — like being in the “wrong” supermarket (he did not believe that the boutique-ish Whole Foods was a real supermarket).  And of course I feel proud, too, when we’re out together because first of all he is a truly happy soul, with a goofy gigantic smile. But more important, any time we are out and it goes well I feel triumphant. How many moms feel gleeful and victorious after a trip to Starbucks with their 22-year-old sons? But if Nat has asked for his brownie on his own and been understood by the barrista, score ten points for us.

So anytime I notice someone like him out in the world, I get all soft and squishy — another of my husband’s phrases. Especially if I see one of ours working somewhere. I think this goes way back to that terrible meeting at his school where I realized the team was gently coaxing us away from academic goals for Nat. The conversation around the IEP table was full of ugly gray words like “pragmatics,” “training,” and “voc.”

But over time I adjusted to this, and eventually I took it and ran with it. Nat getting a job became as much a fixation for me as getting into college. The draconian realities of his challenges made us let go of one life for him, but I sure as hell was not budging when it came to his working. I wanted him to make his mark on the world anyway. I wanted everyone to see Nat as a real person and not some guy with a disability.

Not that he slid right into it, but he did seem to take to a job a lot easier than to school work. They started him on Meals on Wheels, to get him accustomed to the concept of going to work. As soon as he had it down – riding in the van, picking up the meals, bringing them into the person’s home – he was like lightning. When a task makes sense to him, and creates order in the universe, he is the best worker around. Very few people can keep track of order and routines like Nat can. So there are certain jobs that are perfect for him. Eventually the school got him a job at a Papa Gino’s pizza restaurant, assembling boxes. He learned his job so quickly that the problem became basically how to get him to stop making boxes long enough to clear a place for himself at his table. His supervisor would look in on him and find him surrounded by towers of cardboard. The restaurant offered him a second job of delivering coupons in the neighborhoods nearby, and this was his best gig yet. Nat has always been a perpetual motion machine, with long legs to match. Even as an infant he had pushed himself up from my lap on his tiny fat baby legs.  Walking around a neighborhood with one defined task was a dream job for Nat.

Recently I heard that his Day Program was helping him apply for a job at a supermarket, putting away shopping carts.  But, they told me, he’d have to have a job interview and pass a psychological test. There’d be a criminal background check, and a two-week trial period. “This is not playtime,” the director of his Day Program told me.  “This is a serious job.”

So when I saw the guy like Nat putting carts away, I just had to see what he was like, and how he did the job. What were the pitfalls, what sorts of things did someone like Nat have to watch out for? I decided to test this employee, a small, subtle test. I just wanted to see what would happen if I pushed the cart over to him but then veered off to return it myself, something a little out of the ordinary.

Nothing happened, of course. He noticed me out of the corner of his eye and just let me put my cart away. He knew his job, and the store had trained him carefully. I felt really stupid on a number of levels. What was I thinking? That because this young man had a similar diagnosis to Nat, that I could interchange them?  Of course not; he has a whole life too, just like Nat, and perhaps a mother who wants him to make his mark as well!

I see that I have to be careful not to take “one of ours” too far, into patronizing and trivializing.  But it’s tough to remember, as Nat’s program director said, that this is serious, and real, even though that is exactly what I want for him.  Nat is not a typical 22 year old, able to tell me to back off and give him space.  I have to remember that just because he is adorable and seems young, he is absolutely an adult who loves his work.

So I guess this means I should not start shopping at his supermarket…

Tuesday, April 3, 2012

From ThAutcast: Autism & IQ

I often like the stuff that Landon Bryce does at ThAutcast, and this post feels as if it comes directly from my own head (although because there are statistics and numbers, those who know me understand that it never could). I tell people all the time that although Nat “tests” mentally retarded, intellectually disabled, call it what you will, he is clearly much more highly functioning than his scores show. I have witnessed him struggling to take those damned tests, I have seen that he knows that answer, but I also know that he is focusing on the part that interests him, not the tester! I would always say to the doctor administering the test, “Oh my God, he knows that! He just did that yesterday! You’re just asking it wrong! He thinks you’re asking about what the objects are, not which ones are missing!  GODDAMMIT!”

But why should it matter? But it does. That score made me despair once, so long ago, back when I believed what indifferent, ignorant “experts” told me about Nat. And yet — this is the test that determines whether your child will get residential funding support as an adult. A test Nat took when he was — what, 11? 15? Okay, well, the good news is, Nat tests mentally retarded! The bad news is, Nat tests mentally retarded! In the end, I see a man who has gone way beyond any numerical expectations ever placed on him. Two part-time jobs sharing a job coach with two other young men. Living in a new place with a smile on his face, within four months of entering autism adulthood rat race!

(I know, I repeat those facts all the time, but come on, let the Mama brag!)

Also, we see in these statistics that autistics are not all geniuses, with magical skills! With numbers like that, what do we find? Oh, I see, kind of a spectrum of abilities!  What do ya know?

Anyway, bravo, Landon! I am pasting in the entire post just in case people don’t feel like clicking on a link. But you should subscribe to ThAutcast; it will give you a perspective that will open your eyes. You won’t always like it, but you’ll always find it compelling:

 

Autism and IQ

Submitted by Landon Bryce on Mon, 04/02/2012 – 13:39

Published in

 

Here is what the new Centers for Disease Control report says about autism and intellectual ability:

Data on intellectual ability are reported for the seven sites having information available for at least 70% of children who met the ASD case definition (Figure 2). When data from these seven sites were combined, 38% of children with ASDs were classified in the range of intellectual disability (i.e., IQ ?70 or an examiner’s statement of intellectual disability), 24% in the borderline range (IQ 71–85), and 38% had IQ scores >85 or an examiner’s statement of average or above-average intellectual ability. The proportion of children classified in the range of intellectual disability ranged from 13% in Utah to 54% in South Carolina. The two sites with the highest proportions of children classified above the range of intellectual disability (IQ >70) were Utah (87%) and New Jersey (73%). In all seven sites reporting data on intellectual ability, a higher proportion of females with ASDs had intellectual disability compared with males, although the proportions differed significantly (52% for females and 35% for males; p<0.01) in only one site (North Carolina). When data from these seven sites were combined, 150 (46%) of 328 females with ASDs had IQ scores or examiners’ statements indicating intellectual disability compared with 608 (37%) of 1,653 males.

This is how I interpret this:

1) IQ is an antiquated concept.  The idea that a person has a fixed amount of “intelligence” that will remain the same for his or her entire life does not match well with what we know now about the brain and learning.  Teenagers’ IQs can change as much as 20 points in a few years:

Professor Cathy Price and colleagues administered IQ tests and MRI scans to 33 healthy teens — the first time in 2004, when the kids were 12 to 16 years old, and then a second time in 2007-08, when they were age 15 to 20. They found changes in individual subjects’ performance on the tests, with verbal IQ, nonverbal IQ and composite IQ fluctuating up or down, in some cases around 20 points.  In all, 39% of the sample had a change in verbal IQ, 21% in nonverbal IQ and 33% in composite IQ.

2) IQ tests are especially unreliable for autistic people. An IQ test is a snapshot, showing the subject’s performance on one day, on one task.  The capacity of autistic people to succeed on these tests varies more, in most cases, than the capacity of a neurotypical person from day to day and from one set of circumstances to another.  This makes a somewhat unreliable process extremely scattershot in its effectiveness.

3) IQ tests may not match the communicative capacity of an autistic person.  If you cannot communicate your ideas to another person, there is no way to test how intelligent they are.  Rose Eveleth emphasizes the importance of using nonverbal IQ tests with autistic children, after explaining some of the differences between verbal and nonverbal intelligence tests:

The average child will score around the same percentile for all these tests, both verbal and nonverbal. But an autistic child will not. Isabelle Soulieres, a researcher at Harvard University, gave a group of autistics both WISC and the Raven test to measure the difference between the two groups. Although she expected a difference, she was surprised at just how big the gap was. On average, autistic students performed 30 percentile points better on the Raven test than on WISC. Some kids jumped 70 percentile points. “Depending on which test you use, you get a very different picture of the potential of the kids,” she says. Other studies have confirmed this gap, although they found a smaller jump between tests.

4) We can assume that the scores in the CDC report are probably artificially low because of these difficulties.

5) There are still a significant number of autistic people who do have intellectual disabilities.

6) Autistic people with intellectual disabilities matter just as much as anyone else.  They are people, and they are part of our community.  I care very much about keeping them safe, creating opportunities for them, gaining from their contributions, and making them welcome.

Sunday, April 1, 2012

Max Thoughts

Emotion lag is a strange thing. I find these days I am aching for Max! My second born, my sweet, mellow boy. He’s been away at college (NYU/Tisch) since September, and he’s been home several times, and yet, I found myself crying twice in the last few days thinking about how far away he is in terms of our relationship. I skyped with him Thursday night, just the two of us, and though I find it hard to think of compelling conversation topics, I found it very easy to just look at his face. His hair’s grown in from the last haircut and it looked dark; he’s hardly blond at all now. His beard is all filled in, but it’s soft and fine, like baby hair. This is exactly how Ned’s beard looked in college.

Max has strong opinions about many things, even though he comes off as a get-along sort of guy. He gets along with everyone, just like Ned, and does not get all bothered about the irritations of the world (unlike me). He has a few causes (Stop SOPA, LGBT rights, and he’s angry about corporations that act dick-ish, like Apple, AT+T, and Microsoft) that he is capable of ranting about.  Even though these are not my number one interests, I’ve learned a lot about them from him. It’s kind of amazing to learn something from your child.

Max has an edge to him now.  He already seems worldly and sophisticated from living in New York — the coolest part of the city, too (the Village). He slid right into it, just like how he slid into preschool. Back then we walked to the little brick building near our house, his little fat hand in mine, and I don’t really know what we talked about then, either. I do remember explaining to him about God, after which Max said, “I like him.”

He was a love bug as a baby, but now he is so stand-alone. He is not needy at all, and I still worry sometimes that he had to learn to be that way because Nat was so needy already. Once or twice I’ve told him that fear, and he just laughs at me. He has always known who he is, even if I have not. And the wonderful thing is, he also knows me so well. I kind of feel like if you were to explain me to him, he’d then say, “I like her.”

I miss him.