Susan Senator

I attended the inaugural conference of the Profound Autism Alliance in April 2024, Burlington, Massachusetts. The conference had over 500 attendees who included parents and caregivers, self-advocates, professionals, and elected officials. It was an overwhelmingly positive and well-received summit, with presentations by leading autism researchers, autism support organizations, in-the-trenches parents, and medical and behavioral specialists.

For each of the talks I attended, I paraphrased points and added my own observations and tweeted these. The bulk of the talks I enjoyed centered on real-life studies and findings, as well as strategies, for fostering independence for those with profound autism. Profound autism is defined as: “being nonverbal, being minimally verbal, or having an intelligence quotient <50” as well as those in need of 24/7 oversight and protection against wandering, elopement, aggression, and self-injurious behaviors.

The first speakers were autism researchers Peter Gerhardt and Shanna Bahry. The thrust of this talk was to exhort educators and parents to “prioritize independence over perfection” in their profoundly autistic loved ones’ education. They made the important point that “every year in the US. 70,000 autistic teens become adults and lose school-based services. Insurance may cap services.” This situation means that post-22, autistic adults no longer have any of the federal entitlements under the ADA and IDEA (the Individuals with Disabilities in Education Act of 1990). Because of this devastating truth, close to 30% of autistic adults (those with profound autism), are forced to advocate for every single service they will have in adult life, and to rely on whatever they have learned from their education.

Education must therefore be “meaningful to the individual,” said Gerhardt. “We’re the biggest block in the lives of people with profound autism because we only use a deficit-based model. ‘Oh he can’t,’ we say, so we don’t teach it, so he doesn’t. It’s a self-fulfilling prophecy.” There must be several stages in profoundly autism student’s life where the educational team should consider that “anything that you can’t do, someone else will have to do for you” in adulthood. For more about this, see the work by Ayres et al., 2011: I Can Identify Saturn but I Can’t Brush My Teeth: What Happens When the Curricular Focus for Students with Severe Disabilities Shifts. Gerhardt and Bahry advised that “around age 10, time to Pivot, perhaps, to teaching more adaptive skills than developmental–academic–skills” but they were quick to add “of course that depends on the individual.” In other words, there’s no shame in learning primarily adaptive skills.

Gerhardt/Bahry’s talk was rife with useful examples of what to do instead of the usual time-consuming and frustrating behavioral training that occurs in many autism classrooms. For example, instead of spending days or weeks trying to teach someone to tie their shoes, just get them slip-ons. Done. The same goes for the arduous and dubiously useful task of asking someone like my profoundly autistic son Nat to count change, or identify coins. Teach him how to responsibly use a credit card. In preparing for adulthood in this confusing and complex world, figure out the short cuts and don’t waste any more time. Always assess the skills your profoundly autistic loved one needs for adulthood. At any age. The younger, the better. And don’t worry about what’s “normal.” Worry about building independence.

Other talks went more deeply into the focus that caregivers must adopt as early on as possible. Parent advocate and educator Cheryl Ryan Chan made the point that caregivers must stop doing activities of daily living for their profoundly autistic loved ones, even if that is very hard for we caregivers to do. We must remember that once we are gone, all of the tasks we do for our loved ones will have to be done by someone else. And the likelihood of finding people who can adequately replace all of those actions (done in the name of love, no doubt) is low. A caregiver or parent’s goal for their profoundly autistic individual must be independence. “Becoming a ghost is not a reality,” Ryan-Chan said.

The Arc of Massachusetts’ Deputy Executive Director Maura Sullivan presented important timelines that families should follow leading up to their autistic loved one’s graduation from high school. Items in this timeline include contacting your state agency to start a transition plan by age 14 (in Massachusetts this is called the 688 process); look into what guardianship entails, or its alternatives; become familiar with what ABLE accounts can do, and how to utilize them without jeopardizing your loved one’s eligibility for adulthood funding and benefits; and also: register your profoundly autistic individual to vote! I have written about this extensively; it is possible and legal.

Housing in autism adulthood is a topic on every autism parent’s minds. Cathy Boyle, Founder of Autism Housing Pathways, gave an excellent run-through of all the actions a profoundly autistic individual should take in terms of acquiring housing. “Apply for SSI, SSDI. Apply for supportive services, your Department of Developmental Services, Rehab, and Foodstamps, worth $290 a month, are one benefit to apply for autism adulthood. Also get on the Section 8 Waiting List.” Most of the funding streams Boyle discussed were not specific to Massachusetts; there are some very dependable federal resources. Boyle urged families and anyone working with a profoundly autistic person to familiarize themselves with Medicaid, and all that it does (potentially) for these individuals such as longterm residential housing and staff and in some states, community-based day programs.

I’d like to add that if your state doesn’t go for Medicaid reimbursement, scream at your legislators.

And if your autistic loved one is profoundly autistic, remember, you are their voice and a very important one. Cherish that role and stay strong; profound autism is not for the faint-hearted.

I was thinking today of the things I got done, chores mostly, and feeling some relief that I am a useful human being. Bought groceries, paid some bills, filed medical for reimbursements, did laundry. Whew, I have justified my existence.

Well that is just a stupid waste of brain, to have to justify your existence.

So instead, I thought about what I’m grateful for in my life. No justification or explanation or rationale necessary:

Strong marriage

Humor

House

Garden

Healthy sons

Extended Family

Guitar

My guitar pedal (Screamer)

Jerry Garcia

Robert Hunter

Bob Weir

John Perry Barlow

Bob Dylan

Bike

Writing ability

21st Century science and medicine

Nat’s group home/service provider TILL

Charles River Center

BILT, Inc.

Max’s happiness and independence

Ben’s happiness and independence

Nat’s happiness and recent independence from me– hurts so much but is great

Cake

Belly dance always and eternally

Certain friends scattered here and there

Survival shows

Good comedians

Favorite books

So happy today. Everything moved forward and curled around us like a ribbon on a present. We rode our bikes 20 miles, eating breakfast in the middle. But it was later on, almost 4 o’clock, when we discovered a new thing in something very old. We thought we’d seen the whole Outer Cape thing—Ptown, bike path, Nauset Light, Wellfleet Harbor—and yet there it was, as never before. It’s a river leading into the bay. A woman told us about it; neither of us remember who she was. “At the end of the parking lot, the very end.” We couldn’t park yesterday but we could today—thank you Labor Day—and as we walked towards the pale green grasses we could see blue plastic footpaths leading towards water. The water cut through the marshgrass and widened out, lapping at the edges of a white sand beach. We walked the whole way around and saw it, the river, flowing around a gentle bend of beach, beyond which was the bay.

“Where do you suppose is the dividing line, the exact spot where river becomes bay?” I asked, knowing there was no real answer. Still, I walked all the way to that area and I could see a line of tiny dollhouse waves spilling over into a current. This must be the spot!

I walked through it, surprised by the strength of it, like the insistent, pulling hands of a toddler. I met up with Ned who told me to use his goggles and watch the sand fly by underneath us as the current pulled us along. “It’s like flying,” Ned said and I caught a flicker of his deep happiness, having found, at last, what he’d had so easily in dreams.  Then we held hands and we flew together upstream. “I’m Superman,” he said.

After, he floated/flew up and down while I walked against the surprisingly strong current. I moved at a diagonal from the beach, into the bay, my arms spread out from my sides, hands dragging in the water. Everything around me was golden: the sand, the sunlight, the millions of reflections of the sun on the tiny waves. My body felt strong, my eyes felt happy, my mouth smiled. My old love and I had found a new place to play.

I’m making a test blog post for Nedde Sweets.

I learned today that autism support guru Gail Kastorf, has died. My heart hurts hearing this because Gail was my very first support group leader. Gail was the one who showed me I was not alone. Her pamphlet, from the Autism Support Center in Danvers (1993? 1994?) was the first hands-on information I had every been given about autism. I wrote about Gail in my first book, Making Peace With Autism, Shambhala, 2006):

Reaching Out

My next step was to locate other people like me. I called the local branch of the Department of Mental Retardation, [as Department of Developmental Services was called back then], which ran an autism support group at a nearby office. My first night at the autism support group felt to me like coming home.

In this room full of strangers, I listened to story after story like mine. The mother whose child would not eat and for whom even the great Children’s Hospital of Boston had no clear diagnosis, who had finally returned home to Venezuela only to hear from her old family doctor the word she had been fearing all along: autism. Or the father of twins, one normal, one disabled, who had been given multiple diagnoses but who kept hoping and emphasizing the positive, only to realize that all the diagnoses were euphemisms for autism. Or Sheila, whose son had just been examined because the doctors suspected a hearing loss. He had not spoken a word until he was three. Yet testing revealed that his hearing was perfect.

The more horrible the story, the better I felt. Hearing the stories enabled me to formulate a story of my own, an explanation for what had happened to us, and tell it to the group. It went like this: Nat’s lack of interest in peers, toys, playing, all were clues if I had been strong enough to follow through. My pediatrician had also dropped the ball. If only she had known more about the early signs of autism! I should have trusted my gut. Because of the delay in diagnosing Nat, he had missed out on at least a year of potentially helpful therapies. What grim satisfaction I felt telling my story! It made me feel like a different person, cynical, hardened, and wise. I reveled in the eccentricity of the children discussed in the group; the collective misery we all felt was a balm to me. I found strength and relief being with people who had been wounded like me, who had lost the dream of perfect children, who understood how harsh this world can be.

I told [my husband] Ned about the meeting, but going to support groups was not his thing. He had a hard time knowing what he was feeling at a given moment, let alone expressing it, especially to strangers, so he stayed home with Nat and Max while I went to the group. He took over giving them their baths, and loved sitting with them while they played in the bubbles. He read to them constantly, fervently. He also found comfort in making to-do lists. I would find little index cards scattered across his desk and dresser, with items on them like “Call school people” mixed in with “Talk to roofer.” After each support group meeting, I related what I had heard to Ned, recreating the session for him. It was the tender beginning of a shared experience that allowed us some distance from our grief. Together, we analyzed the people I had seen at the meetings, comparing their families to ours. Ned was my sounding board, my information synthesizer. But I think if he had gone with me to the support group, he would have broken down and cried as soon as he tried to speak. Instead, every now and then, he would lie back on the couch and sigh, but he wouldn’t say anything. He didn’t have to.

Please enjoy my latest piece in Psychology Today, about what makes for a successful group home for developmentally disabled adults. You may be surprised by what I think. Read it here.

Isolation is a huge and common problem these days. We hear about it in the context of Covid-19 and children staying home, whether because of safety concerns, or quarantine. The autism parent, however, faces these challenges as well as unique issues particular to their child’s situation. Today my thoughts have been heavy and colored with this special form of isolation. Because I am a lonely and isolated autism parent. I always have been.

For autism parents like me, our sense of alienation and Other-ness begins at the earliest stages of parenthood, when we realize our children are following a different path than expected. Even if our children are diagnosed early on, we may not know how to help them. And therefore we don’t know how to help ourselves. Our confusion for them leads to a confusion of who we are and what we should be doing. This feeling smothered me during Nat’s earliest days and continues even now, in his 33^d year of life. And although I certainly benefit from the strong support network among the champions of neurodiversity, as well as from the advocates for the severely autistic, there is nevertheless a deep sense of isolation that I face daily as an autism mom.  I bet I am not alone, and the very existence of the autism support networks, the huge autism community, the autism grapevine, proves this.

I have found in all these years of parenting Nat, a lovely young man who is into law and order, organization, and seeks out stability, I have had to change fundamentally who I am (chaotic, indecisive, inconsistent), in order to understand him and meet his needs. And that is a lonely assignment. At the heart of my task as Nat’s mom is the assumption that only I understand him. As inaccurate as that assumption may be, that has been my life for more than three decades. And I can’t figure out another way to see it.

This practically solipsist world I live in exists beyond Nat. Autism in itself is not the problem. It is the relentless worry that is. I actually think I raised Nat great. He’s a smart and competent guy and he’s well-liked. But the worry I feel for him is soul-crushing. Other non-autism parents certainly have their particular struggles – I know because I have also raised two non-autistic boys. But autism parenting has a flavor all of its own. Non-autism parents have their own burdens but mine is about being the only one in his universe who cares enough about him consistently. Aside from my amazing husband Ned, anyone else can walk away from him whenever they feel like. Teachers can try and succeed but then they move on. All – and I mean all – of his doctors know far less about autism than me. And now, he’s in the adult world, although I’m approaching 60, I still have to be as vigilant as I have ever been – which is vigilance to a point of torture – because at any point along the way Nat’s life can completely fall apart.  It’s a total house of cards. He cannot verbalize his concerns in a way that most people understand. His frustration, understandably, leaps up like a brushfire. I fought so hard for him to have both a terrific day program and at long last a wonderful group home but I do know that nothing lasts forever.

And neither will I. So I want to figure it out so badly, I want to know what I can do to be sure that he will have a good life when I’m gone. But I cannot. That is something nobody can do. We can make plans and wills and trusts – and we damn well should. We need to find people now who can take on some of our tasks – duplicate us, in a sense – for as long as possible. But the essential question of how will my child grow, thrive, and be happy and safe without me is unanswerable. And that is agony. I don’t think typical parents grapple with that horror. It’s a situation that binds me beyond blood to my fellow autism parents, but also one that is my own private hell. Our own hell.

These horrific days of disease and the rise of hatred in the world also conspire to cut us off from one another. And so in the end all I can do is keep going, without answers, without respite. I have to keep reaching out, keep explaining, and above all stay compassionate, stay human because as far as I can tell that is the only portal out of this solitary existence. To love ourselves, our children, and then to extend that love to others – that is the way we create a high functioning neural network of sorts, one that sustains us and nurtures us so that we are a little less alone.

The call came, as always, when I least expected it. Of course it does, because if I had been expecting it I would have called him first. But there I was, blithely going about my business, doing my work, as if I were like anyone else. But, you see, I’m not. I am an autism mom and that means I need to be life-or-death alert like a rabbit, on call like an ER surgeon.  My beautiful bright son Nat is now 32 and so capable, so competent, mature, and dependable. But he is strung so delicately, like a fine old Stradivarius, and his music is just as beautiful, but it doesn’t take much to knock him out of tune. I love him so deeply and fear for him even more, so that I cannot completely separate my own psyche from his. So many of you out there will think you know better. “Let him go, for fuck’s sake,” you might be thinking. “He’s an adult, he’s fine, he’s come so far,” others might say. “Get a life,” or “I don’t know how you do it,” are the other popular refrains. It’s all the same to me. It just means that you are tired of it, you are frustrated by it.

But you are not me. You don’t know what it’s like to love Nat, and to fear for Nat. You don’t know what it’s like to get the call: “Out of the blue, Nat started screaming and slapping his head.” You don’t know what it’s like to have your heart stop and to feel utterly powerless and sad. So sad. There is nothing worse than your child to be in pain. Nothing. Even if he’s all grown, and has a whole life apart from you. But because of my love and my fear, my whole life comes to a stop because that is how it is, how it has to be.

Why do I fear? I don’t want Nat’s life to become limited. I don’t want the people around him to say, “we just can’t do it anymore.” I don’t want to see the love that they had for him grow dim from their own fear and frustration. I’ve seen it, many times. The people who promised to take care of him, to teach him, to love him, and who failed. In the end, I take him home with me, even though I don’t know how to keep him calm any better than anyone else.

Today, though, when the call came, it was different. The person calling sounded calm. Concerned. Responsible, not afraid. He told me about the out-of-the-blue outburst but he had something more to say:

“When I asked him to use his words so that I could help, he said, ‘December.’ And he said ‘Mom.’”

Then he handed Nat the phone. Nat sounded very wound up, his voice swollen with emotion. My heart puffed up in response. But I knew what to do. “Nat,” I said. “are you worried about December?”

“Yes,” Nat said.

“Because there’s no snow.”

“Yes.”

“So you’re really afraid that the December things won’t happen.”

“Yes.”

I exhaled. “Okay, so Nat, it’s true that there’s no snow. But it still is December. And we still will have Chanukah and Christmas. We’ll still have latkes tomorrow and Christmas in New Hampshire. And there will be snow, but not today.”

“Okay.”

“It’s still December and it’s still winter.”

Shortly after, Nat got off the phone. I sat there looking at my open laptop, at the work I’d been doing, and I knew that was it, that I would not be able to work anymore for now. That I had to get out of there and get home. Charge my phone so that I could call Nat later. Recharge my own battery, too, with a bike ride and a hot bath.  Get my story out of me so that I can breathe again.

And take a moment to be thankful and proud that Nat knew just the right word, and was able to say it.

And that I could be there for him and make it right. For even with a terrible, difficult moment like this, being needed by someone I love so much, and being able to help him – that is what it’s all about for me.

If you’ve been following me for a while, you know that I started bellydancing in June of 2006. Recently I got my 82 year old mother to try it! This is the story, run by my alumni mag the Pennsylvania Gazette. Enjoy!

My August piece in Psychology Today is about accommodations on a personal, down-to-earth level. In other words, Nat taught me how to garden in peace.

Please enjoy my July 2021 Psychology Today piece. I’m hoping to do a series covering a few different ways that we are preparing for the future when we are no longer able to be Nat’s guardians. We are slowly breaking in Nat’s two younger brothers, Max and Ben, to the concepts of SSI, ISP, group home life and day program happenings, which I’ve covered here, in Psychology Today June 2021. I’m also recording other strategies I have found helpful, to come.

My June 2021 column for Psychology Today is the first of a forthcoming series where I describe the process of getting my two younger and neurotypical-ish sons, Max and Ben, prepared for the future as Nat’s guardians. What will it entail? How did we discuss it? You can read about it here.

I hope you enjoy my May column for Psychology Today, about how Nat’s arrival in my life functioned as a rebirth for me. Then, living with Nat as an adult during the Covid Lockdown caused me to recreate my life yet again.

Please enjoy my latest piece in Psychology Today! I’ll try to blog more from now on!

Please enjoy my latest piece in Pyschology Today, about the appeal of the firepit during the Covid era, especially to a nerdy little family like mine.

Here is the sacred order of the flowers. Use this list as a way of putting your garden together. I’ve listed bloom times, colors, and most of the heights. Your work here is to figure out how much sun you have because these are mostly full sun. Every now and then a supposedly sun-loving plant will survive (gasping and leggy) in partial sun but it’s no fun for either of you.

Now go forth and garden.

March

1) crocus 2) snowcaps (white) 3) scylla sibirica (blue, low-growing, spreads beautifully) 4) hyacinth 5) forsythia 6) heath (piney flowering low shrub that spreads)

April 

1) Bulbs like daffodils, and tulips 2) Vinca (low-growing ground cover with purple flowers) 3) Flowering trees like cherry, dogwood and apple, rhodadendron, azalea 4) Lily of the Valley

May

1) Peonies 2-3′ 2) Poppies 2-3′ 3) Primrose 1’4) Iris 2′ 5) Clematis, wisteria -vines. Be careful with wisteria, it is really invasive 6) Herbs – generally low, good for edging 7) Scented geranium – 6 inches to 1’ These are not the annual geraniums you see everywhere in pots – purple and pink 8) Scotch Broom – big shrub, red or yellow 9) Thrift (pink, marble-size, low-growing) 10) Cerastium, aka Snow-in-summer, white on silvery green stems, covers my stone wall by my driveway, spreads like crazy) 11) Lupine, 1-2’ purple 12) Columbine (1-2’ pink, yellow, blue, tolerates a little shade)

June

1) All sorts of roses 2) Delphinium (2-5’ tall, stunning blues to mauve to white) 3) Pinks, carnation ( 6” to 1’, pinks, purples, fuchsia) 4) Coreopsis (1’, yellow) 5) Scabiosa (6” – 1’, periwinkle blue) 6) Lillies (Asiatic, tall, 2-4’ all colors, smell great) 7) Lavender 1-2’) 8) Catmint (1-2’) blue-lavender 9) Rose campion (1-2’, magenta on silvery stems with soft fuzzy leaves) 10) Foxglove, (tall, white, pale yellow and especially purple-pink, is finicky but magnificent) 11) Penstemmon (6”-1’ orangey red) 12) Daylillies (1’-2’, yellow, orange, red) 13) Hydrangea shrub grows big, mostly in blues 14) Sage 1’-2’ usually pale blue or purple 15)Baptisia, 2-3’ blue or dark dark purple 16) Honeysuckle

July

1) Butterfly bush (large silvery green 2) Echinacea – (1-2’, orange, pink) 3) Black-eyed Susans (1-2’) 4) Monarda aka Bee Balm, (2-3’ red or purple) 5) Hydrangea shrubby tree, goes white-to-pink 6) Hyssop ( 3’ blue-purple) 7) Hollyhock (3-5’ lots of colors)

August

1) Asters (Tall, purple or fuschia) 2) Daisies (2-3’) 3) Butterfly weed (orange) , 6″ 4) Tall phlox

September

1) mums, ugh 2) Bridal Bower Clematis (white) 3) Annuals (cheating but what can you do, it’s fall) 4) Shasta Daisies (tall, white, thick and green for the whole summer) Also, they smell kinda bad 5) Perennial verbena 6) Heliopsis (yellow sunflower types)

Here is my latest piece for Psychology Today, “Autism Vacation: Not Quite a Piece of Cake.” Enjoy!

You can read my June 2020 Psychology Today column here.