Thursday, December 15, 2016



The woman who sits next to me in choir was telling a story tonight. She went down to the mail room and asked an employee there a question. The question was not directly related to his job. She mocked the fact that she didn't understand her question. She was even more disdainful of the fact that when she explained it, he didn't know the answer.

I inquired if it was possible that he might have been have been unable to give her the answer she required because he had been placed in the job by the local developmental disabilities agency. It was the sort of job that would be a good placement for an intellectually challenged person. She responded that this was possible, but if he was, he should wear a badge or something so she'd know she was working with someone of limited capability. (My more polite words, not hers.)

What? Someone is supposed to wear a badge to indicate their IQ score? I told her there are groups of people who might think that those with so called normal intelligence should do so. She took that as a joke. I was not really joking.

My mother and my older sister were in the high IQ society, Mensa. I took the test at fourteen, because it would have matter of total humiliation if I couldn't make the grade. I passed. As a result, I grew up in Young Mensa. To be considered in the intellectually disabled range generally requires an IQ score about thirty points below average. Most of my friends and I, depending on the test used, had a gap bigger than that between us and the so-called normal population, most likely including the lady sitting next to me in choir. I don't ever recall anyone proposing making the "normals" wear badges because they would be slow to work with, but there was plenty of frustration expressed about having to deal with people who couldn't keep up.

People are who they are. We all have different gifts and different levels of functioning. We don't label people as Alphas or Deltas as Aldus Huxley had his society do in Brave New World. We are all entitled to basic human rights and basic human dignity. No one is proposing that someone at any level be put in a job they are not capable of doing. But whatever the job is, if it is done competently, there is no reason for derision, if they don't have knowledge in other areas.

Sometimes “normal” folks don't have knowledge that would make them better at what they're doing. A quick example, the lady in my story doesn't read music. When the musical director mentions half notes, or rests, or musical terms, I explain them to her. Does she have any plans to learn to read music? Nope. Maybe I should hang a badge on her.

Friday, November 18, 2016

Interview with Sally Ramsey

Why did you write Galapagos Finches?
Since my sons were diagnosed with autism, it has had a profound effect on my life and my writing. I have given much thought to the possible future of a world with an ever-rising incidence of autism. Galapagos Finches explores one possible future.
Do you remember the first story you ever wrote?
I barely remember a short story I wrote at age eleven when I inherited my grandmother's typewriter. I remember a novella I wrote at age twelve, featuring my favorite hero and a heroine who was an idealized version of me. These days a story like that might be referred to as a Mary Jane. Not long after, I auditioned to join actual creative writing classes and was required to churn out a story a week. Not long after that, I started doing the same just to please myself. It is difficult to remember when I didn't love spinning stories and use the written word as a refuge.
What is your writing process?
I start with an idea and usually an ending. The first line starts me on my way and I write until I get where I think I should being going, generally to a certain word count per day. Once I finish, I usually do at least three rounds of edit/rewrites until I'm reasonably happy with what I read. Usually important points in the story are clarified during the rewrites as well as correction of continuity problems. I also attack a raft of problems with construction and just plain grammar.
Do you remember the first story you ever read, and the impact it had on you?
The first story I remember reading by myself was The Cat in the Hat. I was very proud of myself and memorized the whole thing. I couldn't wait to read more books by myself.
How do you approach cover design?
I have very little artistic talent, but I want the cover to reflect the story. I search for art that will do that. I recently found a professional to turn the art into a viable cover design.
What are your five favorite books, and why?
I honestly can't limit it to five. I like series and genres. I will immerse myself in one for a while and then move on to another. At various times in my life I've devoured science fiction, romance, mysteries, and paranormal adventures.
What do you read for pleasure?
I like books with happy endings, or books where I can't figure out what the ending will be. I love to be reassured, but I also love to be surprised. I also love biographies of interesting people, which can be almost anyone.
What is your e-reading device of choice?
I use an iPhone.
What book marketing techniques have been most effective for you?
I've found that if people develop a personal interest in me through something I've put online for free, they'll be more willing to shell out for my books. I post a chapter to a free story every day --- weekends, birthdays, and holidays included.
Describe your desk
I have a computer table next to my bed with a laptop and a monitor on it. I sit on the edge of the bed to type. I keep a stack of notebooks on my bedside table.
Where did you grow up, and how did this influence your writing?
I grew up in Newark, NJ and then in New York City. There were considerable safety issues, for several reasons. Writing was one way to find a place of security. The need to fight back is reflected in my characters, especially the female ones.
What motivated you to become an indie author?
I do have some books from a publisher, but I like the control, the speed, and especially the higher royalties.
How has Smashwords contributed to your success?
I just started on Smashwords, so I'll have to find out.
What is the greatest joy of writing for you?
I love the act of creation, whether it is in the laboratory, the kitchen, or on the page. I especially like to hear from readers whose lives I've made better, if only for a few moments. I've been told I've brought readers through hospital vigils and tough times at work. There's not much better than that.
What do your fans mean to you?
I love fans. Some of them have become friends. I learn about their families and their lives. I bask in the support and love I feel flowing back.
What are you working on next?
I'll be writing a semi-autobiographical novel. Autism will be a continuing theme.
Who are your favorite authors?
Robert Heinlein, Nora Roberts, Lynsay Sands, Earle Stanley Gardner, Edgar Rice Burroughs, Margaret Truman, Isaac Asimov, L. Frank Baum
What inspires you to get out of bed each day?
I start editing what I wrote the day before, almost immediately (about 6:00 A.M.) and post to the web. That gets me going.
Published 2016-11-18.
Smashwords Interviews are created by the profiled author, publisher or reader.Create your own interview!

Books by This Author

Galapagos Finches 
Price: $0.99 USD. Words: 18,380. Language: English. Published: November 17, 2016. Categories: Fiction » Science fiction » Utopias & dystopias
Galapagos Finches is a science fiction novella which paints a portrait of a future in which the increase in technology spawns an increase in the prevalence of a subset of the autism spectrum (Aspies), given to extraordinary skills. As those with such skills occupy increasingly higher rungs in the society of the United States, a backlash takes place.

Thursday, November 10, 2016


“I don't want that cookie. It has raisins in it.”

“But you love raisins.”

“I like to eat them by themselves, not in anything.”


“That has chunks in it. I can't eat it.”

“Those are tomatoes. You love tomato sauce.”

“Not with chunks in it.”

When the people of Planet NT think about problems with food, they may think about allergies or perhaps gluten sensitivities, or even vegetarianism. Lord knows we may have to cope with all of those, with loved ones on the autism spectrum. And we may throw in casein (milk protein) with the gluten as a no no. I have a cookbook to help with GFCF if you need it. Actually I have two. One, originally distributed by the Autism Research Institute, is out of print, but copies come up occasionally on Amazon. The other is free or cheap on Kindle and is also available as a cheap little paperback. But I wanted to talk about the quirkier stuff. A lot of that has to do with texture.

There are many things that may be unacceptable, or just evoke extreme anxiety. I remember watching my older son going over a fish filet for an hour, with a pair of tweezers, before creating a fish taco. He was making sure there weren't actually any bones in it. Nuts and seeds may be unacceptable. Lumps, chunks, or even bits of herb may refused. A hamburger patty and a bun may be eaten separately but refused when together. Vegetables may be anathema.

You can try insisting that what is put before your loved one must be eaten, which is very unlikely to be successful, or you can adapt. Honestly, would you eat something that made you uncomfortable? Would you want to be forced?

Adaptations are not that tough, once you understand what preferences are. There are many smooth sauces out there. If you can't find one, things can be pureed. It you leave nuts out of a cookie or cake, you may find that mini chocolate chips or butterscotch pieces are not only acceptable, but make a better cookie. If you are caretaker to someone who wants to cook for themselves, you might want to let them do so, just hang close enough for safety. You may find the amount of food they shovel into their mouths when they've cooked their own meal, astonishing. In addition, you will be teaching living skills in a non-threatening way.

The most important thing about food is reading labels. That's not always the easiest thing to do, especially if you're like me and left forty in the rear view mirror a long time ago. A magnifying app on your phone can be helpful. So can a plain old magnifying glass. 

In our family, the biggest hazard has always been MSG, which makes my younger son violent. I have met food buying caretakers who did not know that it stands for monosodium glutamate. Bad things ensued, especially from chili beans. 

Due to a quirk in the law, non-dairy does not mean casein free. If you're worried about casein, you do have to check the fine print. Forget the word natural. It doesn't mean something is good for you. The cyanide in peach pits is perfectly natural. That doesn't make eating it a good idea. The USDA organic label refers to the avoidance of artificial fertilizers and pesticides. That doesn't necessarily make the food good for you either. You still have to check on what is in it. 

Eternal vigilance can be the price of a quiet dinner and healthy son or daughter. As I've said before, the buck stops here.

Sunday, October 30, 2016

Is An Obsession Always a Bad Thing?

Ever notice how judgment of behavior varies between those who are perceived as neurologically typical (NT) and those who are not? The choir director at a church where I once sang, had a son who was totally attracted to drums from a very young age. When he was eighteen months old, his mother had to hold on to him tightly, because every time she let him loose, he would run to the church drum set. Now if he had been diagnosed as autistic, that would have been called perseveration. He might have been strongly urged toward another activity or at least emphatically chastened to leave things that didn't belong to him alone. By the time this particular child was eight, he played drums at least as well as most adult drummers and could fill in with the adult church band. What might have been called perseveration in a child with autism, was perseverance in an NT, something to be lauded and celebrated.

So where do you draw the line, and about what do you draw it? Can one be a truly excellent musician without spending every available moment practicing? Is it terrible to believe in a place for everything and everything in its place? Is it wrong to want to spend every waking hour in front of a computer? Is it bad to pursue an interest that fascinates you but bewilders your parents?

The answer is not a matter of diagnosis. The difference between perseverance and perseveration is whether it interferes with the quality of your life or enriches it, whether or not you have a label. To pursue music, art, or even cleanliness with a passion and end up with a successful career, is a good thing. To obsess over Fermat's Last Theorem until you prove it and win a Fields Prize, is a good thing. To obsess over the perfect cookie and end up with millions in sales is a good thing. To obsess over a computer to the point where you teach yourself to type, even if you can't talk, is a good thing. To obsess over the treatment of cattle until you become one of the world's leading experts is a good thing.

If you can't leave the house in the morning because you are afraid your toy cars might not be lined up just right, it is not a good thing. If you can't eat in restaurant unless you get the one table where you're willing to sit, it's not a good thing. If your food preferences limit your diet to the point where you become malnourished, it is not a good thing. If you are so obsessed with your appearance that you have to get up three hours early to get your hair and makeup right, it is not a good thing. If you insist on picking your friends depending on whether they agree with your taste in music, or cheer for the same team, it may not be a good thing.

One of the criteria for diagnosing autism is narrow interests, but it certainly does not tell the whole story. In the first of the set of paragraphs above, there are people who have been diagnosed with autism and some who have not. You could probably think of a name or two. In the second there are some who would be diagnosed with autism or OCD, or both, and those who would not.

Some with autism have savant skills in music, art, math, computers, or other bents that may be more off the wall. Sometimes parents latch on to those as a hope for a good life for their son or daughter. Sometimes it works out. Sometimes it doesn't. Savant skills and the obsessions that can accompany them can be positive, but not in a vacuum. Everyone requires at least a few living skills too. A form of communication is essential, whether verbal or by some other means. If a person can write a symphony but not make their basic needs understood, they are not going to have a great life. Similarly, an artist who can detect the tiniest detail in an object and reproduce it, but is painfully overcome with sensory bombardment, will live in constant agony. The skill, the obsession, can be great, but the failure to look at the other aspects necessary for a comfortable existence, can be a disaster.

A person, with or without autism, is a whole being with many facets. Characteristics, whether valued by the world at large or not, must be evaluated on the basis of whether they make a contribution to a complete and fulfilling life.

Wednesday, October 19, 2016

Combating Ignorance

Mark Twain said, "It ain't what you don't know that gets you into trouble. It's what you know for sure that just ain't so." Nowhere have his words been truer than in the history of autism. First it was assumed that autism was the fault of the parents, specifically the mother. This went on for decades. Families were torn apart, children were tossed into institutions under the theory they'd be better in their parents' absent. There were two things that were particularly odious about that situation. One was that there was no evidence for it, but professionals just accepted it as true. The other was that a particular so-called expert named Bruno Bettelheim perpetrated it, primarily by writing a book called The Empty Fortress.

Bettelheim was not only mistaken, he was a fraud. He claimed to have a doctorate in psychology. He did not. His doctorate was in art history, and even that was eventually rescinded. Did the profession check him out? No. His word taken as gospel and disseminated to the general public through talk shows such as Dick Cavett. In 1964, Bernard Rimland published Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior, proposing that autism was physiological, not the result of anything parents did. He fingered the limbic system in the brain, which was incorrect, but his basic theory was true and there was much evidence for it. But in the eighties when my kids were being diagnosed, I was still being asked if I was worried about having money to raise my kids when I was pregnant, or resented them in some way. Some psychology professionals were still going with the psychological state of the mother as a cause. In the nineties, Bruno Bettelheim was still appearing on Good Morning America. Even though neurological symptoms had been clearly associated with autism, it took a long time for the truth to penetrate. In all that time, many professionals who were supposed to be helping those with autism and their families, were still contributing to their misery.

Well, we know better now. Do we? In 1989 a study came out declaring the revolutionary idea that children with autism really do love their parents. Well duh! This year one came out saying the same thing. Really? In decades, no one was paying attention to what had already been learned. I remember watching my younger son use a plastic sword and big rubber gloves from under the sink to play Don Quixote, after seeing Scott Bakula play him on Quantum Leap. The problem was, that at the time, the experts had proclaimed that autistic children don't indulge in imaginative play. Uh huh.

So what do they say today? In many cases it is that kids must be hurt to alter their behavior for their own good. We've been there before too. In the eighties interventions based on Skinner's pigeons were riding high. Then people died. There was a backlash, with many forms of aversives banned in some states. Non-abusive interventions were found, like those outlined by John McGee in Gentle Teaching, or social stories, or sensory treatments by physical therapists. Some of these worked to some extent, or not, depending on the person being treated, but at least they did no harm.

But now it's back to the future. Things that were long ago established as unacceptable are acceptable again. Why? Money. There's gold in them thar hills. Parents of children with autism are now, and have always been, desperate not only to help their kids, but to make their own lives easier. They are fair game for any promise, proven or not. Schools unwilling to allocate sufficient resources search for cheap and easy solutions, whether they are proven or not. Those solutions also include medicating a large percentage of students, even if such medication has not been shown to affect long tern academic or social success. A pill is so much easier than a well executed plan suited to the unique needs of a child. Over time medications rise and fall in popularity as dangerous side effects, such as obesity, diabetes, and tardive dyskinesia(involuntary movement) are discovered. But there's always a new one, or an old one re-purposed as a new one. The drug companies rake in the profits and kids may suffer permanent damage.

So what's a parent to do? Some of you will hate to hear this. The buck stops with you, not with a teacher, school, doctor, therapist, or case manager. The first thing you have to do is develop a healthy skepticism for all of those folks, plus the popular press. If someone suggests a drug, research it. Find the scientific studies and by that I mean those with large samples and double blinds. If they don't exist, your child is a guinea pig. That may be what you want, but at least you'll be making an informed decision. If you don't speak science, find someone who does to translate for you. If you decide to go with something, keep up on it. New studies come out about efficacy and side effects. There is no shame in changing your mind when better evidence comes in. If your school isn't doing its job, call an IEP meeting. If that doesn't work, request a hearing. Better still, band with a group of parents facing the same problem. Districts only have the budget for a certain number of fights. If they get bombarded, they can and do give in.

Also remember, usually some symptoms get better, but autism doesn't end with childhood. If your sons and daughters grow up to be independent, if weird, be very grateful. But chances are very good that they will not. They will need support, and you are the one who will care the most about seeing that they get it. So take care of yourselves too. It is very likely that you are running a marathon, not a sprint. Don't exhaust all your energy out of the starting gate. You'll need it later. And never become complacent.

Saturday, October 15, 2016

When Only One Spot Will Do

When Only One Spot Will Do

Today I was sitting in Wendy's with my husband and my son DC. We were in chairs by the big screen in the back, rather than at a table. Every six months or so, DC decides on a different restaurant for our Saturday afternoon luncheon outings. Even though they are more expensive, conventional restaurants are easier, because DC will sit at whatever table the host or hostess picks. With more affordable fast food, whatever table we sit at the first time, becomes the only table he'll sit at during subsequent visits. He's also always refused to let us even order, until we were at his desired venue. If someone else is sitting there, we have to wait until it's clear.

When he was younger the wait could be painful --- literally. As he grew increasingly frustrated, DC would pinch or bite, usually me, but occasionally my husband. He would also protest constantly and we worked hard getting him to keep to an inside voice. Now, at thirty-five, we still have to urge him to keep his voice down and not to point or loom, but he no longer tries to hurt my husband or me.

Usually a wait for DC's table would only be a few minutes, until someone finished a meal. Unfortunately today, the occupants weren't eating. They had drinks, but were engaged in conversation, with no sign of when they would leave. As DC grew more and more upset, I began to think they would be there forever, but after an extremely long forty minutes, they finally took their leave.

Once we'd received our order, both DC and I were both calmer. And after lunch, full tummies made life downright rosy again. But even though it will cost us, I'm hoping that DC will decide on a new restaurant soon, one where someone else picks the table.

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Sunday, October 9, 2016

Be Careful What They Watch

I have two sons with autism, JJ and DC. JJ is very high functioning and independent. DC is not. When they were young, my husband and I coped with childcare by working different shifts. Since I was more of a night owl, I worked evening until early morning and my husband worked early morning until mid afternoon. We all had an early dinner together in-between.

VCR's were new at the time. My husband and I had plunked down five hundred dollars for one which my husband used to tape a few of my favorite TV shows while I was at work. One of those was the original MacGyver. While I eventually found myself screaming at the screen when I detected science flubs, I loved it, and watched some episodes over and over, rewinding my favorite parts. (Yes I know, very ASD behavior.) DC watched with me, enjoying the repetition as well.

Unlike what's on a DVR, you can keep video tapes pretty much forever, and I kept mine. Years later I still watched some of them and DC still watched with me. JJ was in high school and I held two part time chemist jobs, one in the morning and one in the afternoon. I was able to do so because I had found an after school program for DC, which used the facilities of a church across town. I picked him up in the late afternoon every weekday.

DC loved to throw things out of car windows, but the car I normally drove had windows that locked from the driver's seat, frustrating his efforts. Then for a week, my car was in the shop and I was driving a loaner with manual windows. DC had thrown his shoes and anything else he could get his hands on out of the windows until I locked just about everything except minimal clothing in the trunk. I had almost made it home from DC's program when I looked back and realized DC was no longer in the back seat. An angel on my shoulder kept me from sharply hitting the brakes. I slowed down gently, pulled over, and got out of the car.

Unable to toss anything out the window, my son had crawled out himself, and like an episode of MacGyver was on the roof, making his way toward the hood of the car. I got him down, put him back in the car, explained as best I could that he was not MacGyver and could have been hurt. I got him home without further incident. Thankfully, the next day I got my own car back. After that I was much more careful about what DC watched.

Saturday, October 1, 2016

The Day I Made Lemon Chicken for Oliver Sacks

It all started when I was sitting with the late Wayne Gilpin and the rest of the then board of the Autism Society of America in the Banyan Tree. It was 1993. At the time, I was the president of ASA and Wayne was treasurer. We had run against each other for president and he had been surprised and a little ticked off at losing. To get him to agree to be treasurer, I had to make a deal that he'd be in charge of the international conference in Toronto. The bar we all sat in was in the hotel that housed it.

Neither Wayne nor I was interested in drinking, so we talked to each other. A presenter had just pulled out of the conference and I made a proposal to be a fill-in. I would talk about my family: The Autism Family. We had an empty session and Wayne had nothing to lose, so he agreed.

I wrote that night until one A.M., filling page after page of a legal pad with my presentation. Only slightly bleary, I presented it the next morning. I told the room about my two sons at very different functioning levels. There wasn't much news in that. Then I dropped the bomb. In the late '80”s Edward Ritvo, then the head of the Neuropsychiatric Institute at UCLA, wrote a letter to an Autism Journal, outlining ten anonymous high functioning adult phenotypes of autism. Two of those ten were my husband and me. Even though the fact was known to members of my local autism community, especially since Dr. Ritvo referred other high functioning adults to me, it had never been announced to the world at large. Both my husband and I had careers that might have been adversely affected. Most people still saw autism in terms of Dustin Hoffman's portrayal in Rainman. It wouldn't have done our health insurance any good either. So when I let the news out, I did it outside the country.

The room where I did my presentation was packed. I gave, among other things, my personal experience with what stimming felt like, and tricks I used to appear as normal as possible in public. I found out later that there were people from thirty-eight countries present. At the end, a woman came up with tears in her eyes, to thank me. The audio tape was the second best seller at the conference, with only that of a well known person with autism ahead of it. It was also referenced by the keynote speaker at the plenary session. He had listened to it before he presented his own talk.

Sometime after I'd returned to where I lived in California, I got a call at the metal finishing plant where I was working as chemist and Q.C. manager. It was a representative for Oliver Sacks. I was told that the woman who had approached me after my presentation was Mira Rothenberg, author of Children with Emerald Eyes and pioneer in the treatment of children with autism and schizophrenia. She and Dr. Sacks were friends and she had convinced him that he needed to meet with our family for a new book he was writing. I was all for meeting someone on whom a Robin Williams movie was based, so I agreed.

Dr. Sacks arrived to see our family later than planned, getting caught in California traffic. He was charmingly apologetic. He also brought several of his books, which he autographed and gave to me. Insisting we call him “Oliver,” he spent the day. I made hamburgers for lunch and lemon chicken for supper. He was fascinated by the process, accompanying my higher functioning older son to the backyard to pick a fresh lemon I had requested. He confessed that his custom was to have someone cook him a pot of bouillabaisse, to last the week. He hadn't expected to like the chicken, cutting himself a small piece from his portion on the serving plate, then later eating the whole thing.

The one thing that stands out most in my memory, was watching him stare at my lower functioning younger son, typing rapidly at a computer completely by touch, a skill he had taught himself. He exclaimed, “What a strange creature!”
If anyone else had said something like that, I would have asked them to leave my house. In his case, I didn't get mad, because it was merely an astonished observation.

Dr. Sacks took off after supper. His next stop was to be to see Temple Grandin in Colorado. Temple and I knew each other because we'd worked together on the National Board. Oliver gave her a tape of my presentation in Canada, and after she listened to it, she called me. We talked for a long time.

Oliver had asked if it was all right to use our family's name or if we wanted him to disguise us. He even offered to put us in another state. I told him that California would be fine, but asked that he change our name.

As it turned out, we, as “Family B,” got a paragraph. Temple got the rest of the chapter. Even so, from Oliver's description of our home, every one from the local ASA chapter who'd ever come to our house for meetings, knew it was us anyway. I didn't mind. They weren't the ones I was concerned with fooling. When the book came out, Oliver sent me an autographed copy, which I still treasure.

The most wonderful thing that came out of Dr. Sacks' visit was that for a while we became pen pals. He wrote on a real typewriter with a ribbon that badly needed changing, but his letters were well worth reading. At the time, the neurotransmitter focus in autism was on dopamine and serotonin. Because of my younger son's extreme sensitivity to monosodium glutamate (MSG), I suggested that medications involving the glutamate system might be more helpful. Oliver was very encouraging when I proposed my theory. It was a joy and a relief to have his attention. In the end, at least where my son was concerned, I proved to be correct. Glutamate protective substances greatly improve his behavior. That day with Oliver Sacks, and our correspondence afterward, helped to improve my son's life and mine. I will always be grateful.

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Friday, September 16, 2016

When They Grow Up

An autism diagnosis for your child is devastating, but it comes with an element of hope. There are autistic characters on TV using their savant skills to solve crimes or crack computers. Programs hawk incredible changes. Then there is all that research. Your child will be in school until he's in his twenties, by then there will be a solution right? Everything will be just fine.

There are many possible futures, but unfortunately this is one that is not uncommon.

Your child has become a man or a woman, most likely a man, and things are not fine. They're not fine at all. It's not like what they show on TV. All that research worked great on mice but didn't do much for human beings. And those programs that promised to make your son look and act normal, they didn't. His spoken language has the syntax of a two year old and he has regular meltdowns, pinching or sinking his teeth into the nearest person who can't duck or get away in time. Often that person is you. Now what do you do?”

Okay, you can take time for a good cry, but after that you need to get busy. Services are usually provided by medicaid waiver. That means doing lots of paper work. You have to do it. Get on every list you can. Even if you don't need the services, the need may sneak up on you. If there's a waiting for housing or respite, even if it is years long, make sure you get on it too. Eventually you will reach the top.

Cling to whomever his willing to help, whether it is your family, your friends, or your religious institution.

Most of all, take care of yourself. You are in this for the long haul. Perhaps there will be a cure and if that happens, it will be wonderful. But you have to cope with the present. Remember to sleep. Remember to eat. Find something you love to do and do it. Be checked for high blood presure. It happens to parents of individual with autism --- a lot. The last thing you need is a heart attavk or a stroke. And believe you can do it. You can.

Saturday, September 3, 2016

Only the Father.

I just remembered a funny thing that happened when my son DC was in school. However primitive his speech may be, his computer skills are anything but. He comes by them honestly through his father, who hs been a computer professional since the sixties. DC is very possessive about computers and his time on them. He managed to lock everyone out of a computer belonging to his school.

Usually my husband and I were notified of everything DC did, via his communication book, but not about this incident. Perhaps the school was embarrassed. They had called in two computer experts to fix the problem, to no avail. A few days later, when my husband and I were attending a PTA meeting when one of the teachers sheepishly confessed about the problem to my husband. It took my husband about five minutes to straighten it out and give the school access to their computer again.

Only the father could undo the work of the son.

Thursday, September 1, 2016

Mix 3

You can get these flours from Bobs Red Mill. They are certified Gluten Free by Elisa testing. You can cut the amounts if you like. I actually prefer baking by weight. I will give those values as well

                                            Small batch

4 cups amaranth flour  480g         144g
4 cups tapioca flour     480g         144g
3 cups arrowroot flour 384g         115g

Chocolate Chunk Cookies

2/3 c shortening           105g
1/2 c sugar                  105g
1/2 c brown sugar         81g
1 TBSP water               24g
1 large egg                     53g                 
1 tsp vanilla                      2g
1 1/2 c mix 3                207g
1/2 tsp baking soda           3g
1/2 tsp salt                        3g
6 0z or 604g Enjoy Life dairy, nut and soy free Mega Chunks Semi Sweet

Preheat oven to 375 degrees F. Cover cookie sheets with  parchment.

Cream shortening, sugars, and water. Add egg and vanill and mix intil smooth. Add dry ingredients except for chocolate chunks. Mix until smooth. Blend in chocolate chunks.  Drop by heaping teaspoons on cookie sheets. You may form into balls by hand for more even cookies. Bake about 10 minutes or until light brown. Cool two minutes on cookies sheets and transfer to cooling racks. You should have 3-4 dozen cookies.

For flours:
You can get the chocolate chunks on Amazon.
Try to make your cookie sheets full, cookies are less likely to burn.

Saturday, August 27, 2016

A Tale of Two Sons

I have raised two sons with autism. They wear the same size shoe, but that's where the similarity ends. While pregnant, I did everything I could to assure there wouldn't be any problems with the boys. I saw the doctor regularly, ate well, didn't smoke, and consumed no caffeine or alcohol. I also made the decision to have my children by natural childbirth, not wishing to expose them to anesthetics. When you make plans, God laughs.

When my older son JJ was born, he had the cord around his neck, a low Apgar, a white blaze in his hair, and rarely stopped crying. He rapidly developed a skin rash as well and gained almost no weight. As it turned out, he was allergic to the cream we had been given in the hospital. As a precaution, his doctor declared that he could have only breast milk, wear only cotton cloth diapers and cotton clothes, and that his clothes be washed only in Ivory Snow. Under that regimen his weight gain rose to normal levels, but he still cried often and didn't sleep through the night for nine months, about the same time he transitioned from breast milk to soy milk. We took him straight to cup, which after an agonized outburst I will never forget, he seemed to accept well.

When JJ was less than a year old, my husband was offered what he felt was a better job in California. I was uncomfortable with the idea of moving. We had only lived in Saint Paul for two years, but I had made friends there and a friend I already had from college lived there too and was a willing babysitter. JJ's pediatrician was in St. Paul as well and he had been both available and extremely diligent. Still, my husband's parents lived in California, so we would be gaining proximity to grandparents. It seemed like a reasonable trade. JJ did remarkably well on the cross country trip, and seemed to have made a developmental leap. Other than complaining loudly in the morning if he wasn't immediately fed rice cereal and soy formula, he was such a happy baby, so much so that people at the hotel where we were housed for our first month remarked on in it. To everyone's further amusement, he had begun to crawl very rapidly, scooting down corridors at warp speed.

Other than picking up colds and respiratory infections we had never seen in St. Paul, and crying his heart out in the church nursery, JJ seemed to be doing well in California. When he was eighteen months old, I went back to work at night, leaving him in the care of a fellow choir member from church during the hours I slept. A week before he was two, he surprised us all by beginning to read spontaneously. His first word was gleaned from a commercial, “Wards.” The second was like it, “Sears.” All the brands of cars soon followed.

We really thought we had a genius on our hands, but he was confounding. He was a relatively late walker, and when I started him at the local daycare at age two, had trouble adjusting. He was also very difficult to potty train and was limited in his interactions with other children. In some ways he was Jekyll and Hyde. He had a sunny smile both adults and other children loved, but could also become extremely angry and even bit other children. His fine motor skills were excellent, his writing and drawing way ahead of other children his age, but his gross motor skills poor. He could barely manage age appropriate play equipment. JJ entered an advanced kindergarten at a magnet school because of his advanced reading skills, but the school nurse saw soft neurological signs. A visit to a neurologist produced a diagnosis of minimal brain dysfunction, but the doctor involved told us he really thought JJ was fine and was using the diagnosis to get insurance to pay. JJ was still having so much trouble relating to the other children, we decided, even though we could scarcely afford it, to send him to private school.

When JJ was four, his younger brother DC was born. His birth, again without anesthesia, seemed flawless. His Apgar was high and his early developmental milestones, including walking, were for the most part ahead of schedule. I thought that the second time around, I had the easy one. Then things began to change. At ten months, he weaned himself, pushing the breast away. I was disappointed, as I had been hanging out with some women with the La Leche League and would have been more than happy to continue. As he approached age two, I watched with dismay as he lost words he had acquired early, until he was finally mute. His skills regressed from ahead of normal, back to the level of three months. At first we thought he had lost his hearing, but that proved not to be the case. Finally at age two and a half he was diagnosed with autism. At the same time, his brother went from a bogus diagnosis for minimal brain dysfunction, to a real one, for autism in the residual state.

DC, diagnosed young, had interventions of all kind, practically from the start. We went together to UCLA, where we had a course from a therapist following the teachings of Ivar Lovaas, the basis for ABA. He had speech therapy. He had another therapist, in our home, trained by Lovaas himself. He was in special eduction from the outset and stayed there throughout his school career to age twenty-two.

After two years in a private school, JJ went back to public school. At various stages he was in regular, gifted, and learning disabled classes. He had speech therapy, which was less than successful, something that was blamed on him by his therapists. He had social skills training which had more impact. The most useful things he had were a cub scout troop with normal kids and youth group at the church. Both were great socializing experiences. In High School he was the only child they'd ever had who was both working under an IEP and up for valedictorian.

Fast forward. JJ, my older son, the one who was born with obvious problems, now is almost forty and has two bachelors degrees, a masters, and a PhD. He works in a government laboratory in another state, lives fine on his own, and comes home for Christmas. In many way's JJ was the jumping off point for my novel,Dark Awakening.

DC, who at first seemed the golden child, lives in a house not far from us, with one roommate and twenty-four hour staff. He's thirty-five. The only paying job he has ever had, he was only able to hold for about three weeks. He is brilliant with computers, but his behaviors keep him from capitalizing on that skill. He reads and writes well, but his spoken language would be primitive for a two year old.

What one might take away from this is that early intervention, even when delivered by experts, promises no happy ending. Another conclusion might be that all is not lost without it. Both are possibly true, but a better thought is that persons with autism, even in the same family, can have very different courses and very different outcomes. The happiest one is that even the most difficult baby can turn out pretty well.

Tuesday, August 23, 2016

My Latest Interview

Why did you write your story about a detective that sings instead of talking?
I have two sons with autism. I noticed that for them, and other kids with communication difficulties, it was easier to understand something that was sung than something that was spoken. With a little research, I realized that music and spoken speech are handled differently in the brain. I decided that singing would be one way my hero, Cary, would cope with his challenges.
Who/what inspires you the most in your writing?
First of all, my experience with my, and other parents' challenged kids. I am also inspired by everyday events. I take a cue from politics, from what is going on at church, and from what is happening in the world. I pay attention to how people interact with their families and how their experiences differ from my own.
How did you discover you could maintain your sanity with writing?
When my children were young, life was very difficult. We had almost no help from family and little from friends. I was feeling overwhelmed and isolated. Writing gave me a safe place to be and yet a way to reach out. I could retreat there whenever I needed a refuge.
How did it comfort you?
Writing is an antidote to powerlessness. I am a control freak, but much of what has happened in my life has been out of my control. In writing, I can create a world I would like to live in. I can create language, culture, religion, and even music. I can punish villains and allow heroes to triumph.
What are your key messages in your books/writing?
One of my key messages is that people who are different have value. You don't have to straddle the norms to have a place in society. I also write that having scruples and wanting to do the right thing, even when it seems there is no obvious profit in it, can work out for the best.
What is so unique about your first GFCF cookbook?
When I wrote my first GFCF cookbook there was almost nothing gluten free in the stores. I was pretty much on my own developing what later became wildly popular. Adding in casein free was an additional complication. I also tested my recipes on people with and without autism. At the time, I was just concerned with putting out recipes that would actually work and taste good. There are many more gluten free ingredients and products readily available now. That has enabled me to design basic mixes that simplify things for busy caregivers. One thing that has not changed is the shortage of casein free ingredients. Due to the vagaries of the law, foods listed as dairy free may still contain casein. That means that in my new cookbook, I'm still compensating for what is not readily available in the market.
What are the two novels born out of your experience in the autism world?
As I am now finishing up a third, there are three. The first is Singing the Solution, about the Detective Cary Ellis, who has an easier time singing than talking. Cary also has many of the social deficits that are seen in autism, as well as sensory processing difficulties. He also has some of the savant-type skills associated with high functioning autism, and puts them to work solving crimes. Singing the Solution is serialized on 
Dark Awakening, published by Snow Leopard is available on Amazon and on the Snow Leopard site. It is about an autistic vampire. Some of his symptoms, especially sensory problems, are eased when he is turned, but he still maintains his social awkwardness and his stubborn adherence to what he feels is right. Despite that, he makes a place for himself in the world and is able to aid others as well. The book also illustrates that even persons with autism are capable of loving, and loving deeply. The sequel further explores those themes. I've heard from many readers who are anxiously awaiting its arrival.

Wednesday, August 17, 2016

The Road to an Autism Novel
A Parent's Journey with Two Sons with Autism

I remember the day in 1983 when I was driving up the Orange Freeway, barely able to see through my tears. My younger son, Don, had just been diagnosed with autism by a doctor at Children's Hospital of Orange County. It wasn't that we didn't know anything was wrong. We did. He had stopped talking. When he was upset, he was like a wild animal, digging his teeth into my arm and twisting, leaving huge red and blue welts. We had been through hearing tests and treatment and speech pathology. Then there were the doctors who not so subtly implied that the problem was behavioral and my fault. One was a disciple of Fox, a behavioral guru of the time. There was autism in the family. My husband's cousin had been diagnosed as a baby, but the onset of his autism had been attributed to a gamma globulin deficiency --- something my son didn't share.

The diagnosing doctor had been kind. She gave me a referral to B.J. Freeman at the Neuropsychiatric Institute (NPI) at UCLA. She offered to call my husband for me and give him the news. I declined her offer, feeling that a blow like that shouldn't come from a stranger. I gave some thought to driving my son and me into a wall, ending the problem there and then for both of us. I couldn't do it, not because I was afraid, but because I had to pick my older son, JJ, up at private school, where we'd enrolled him because he didn't fit in a normal public school environment.

JJ seemed almost the opposite of his brother. He had started reading spontaneously a week before he was two and rarely stopped talking. He was brilliant, going through primers that should have taken six months, in a week. He was also woefully poor at doing things that came naturally to other kids, like knowing not to change his clothes in public.. He was also clumsy and needed weekly sessions at the Sensory Motor Institute at Long Beach State University to improve his coordination. By the time I reached his school, I had dried my tears and didn't let on that anything was wrong. I didn't want to admit it to myself.

Visits to UCLA yielded another blow. My husband and I had taken JJ with us when we took Don to see Dr. Freeman. After she talked to him for a couple of minutes as he expounded on the differences between the different Superman symbols, she gave my husband and me a funny look and suggested we take JJ to see Dr. Ritvo, then the head of NPI. Dr.. Ritvo diagnosed JJ with autism in the residual state, one of the categories in the DSM at the time.

I found myself both devastated and encouraged. Yes I had two kids with autism, but I had managed with JJ, we were coping. I would manage with Don too. The words of doom we had heard at UCLA, that 95% of kids like Don ended up in institutions, would not apply to my son. He would be in the other 5%.

It was easier said than done. Bruno Bettelheim still held sway and many, including family, were quite willing to believe that everything was my fault, despite the genetic hints on my husband's side. Genetic linkages for autism had yet to be officially established. Dr. Freeman told me where to reach out for help: the local chapter of ASA, and the nearest Regional Center. I also was made aware that kids with developmental disabilities could be put in public school at age three, something my local district certainly had never mentioned. It took me two months to make the call to ASA, mostly because I couldn't get the words out of my mouth.

Once I did, I didn't stop talking anymore than JJ did. I was sent out as a speaker and moved up through the ranks. I was made a chapter vice president. Our family moved to Orange County on the advice of Dr. Freeman, to receive better services. I soon started an autism support group, and then re-founded an ASA chapter in Orange County that had been merged with the Long Beach Chapter when it's original founder had a stroke and could no longer manage it. Along the way I found out that strokes and other signs of stress were unfortunately too common among parents, especially mothers, of children. With autism. I did the best I could to help other parents I knew, even though I eventually went back to work. That was not easy to manage. At first I worked nights and my husband days, so we could split the time taking care of the kids when they weren't in school. Then I found part time work I could shoe horn in around my kid's needs and my responsibilities to ASA. Part time work as chemist is not easy to come by and I had to be creative, eventually becoming the co-founder and minority owner in a company. My computer guru husband worked full time making more money than I did, but I handled most of the responsibilities with they kids and still earned appreciable income. I also became a member of the National Board of ASA, its secretary, and finally its president. That meant working in the daytime, taking care of the kids, having my ear constantly to the phone for parents who called for advice and referral, then staying up at night and taking care of ASA business by computer modem, not a common thing at the time. When I left the presidency and then the ASA Board, I became CA State president and then went back to running my local chapter.

During all this time, one of my main coping mechanisms, indeed one I'd had since childhood, was writing. My writing was a strange brew. It started with poetry when I was six and graduated to short stories when I received my grandmother's old typewriter a few years later, There were plays and a simple musical that were actually put on at school. There was also what many might refer to scornfully as fan fiction, although at the time I don't believe the term existed. Multiple obsessions were involved including one about Star Trek which stretched through my teen years right through my time in graduate school. That writing brought me friendships with others who didn't fit the classic social mold. I continued writing when I was finally living what seemed to be a normal life with a husband, also a Trek fan, a house, and kids, but it took forms that looked more normal too. I sold some poetry and wrote a book on creating a babysitting coop, that I eventually gave away to a regional center.

The veneer of normalcy began to crumble even before Don's diagnosis when I was a stay at home mom and realized that watching four of another mother's kids was much easier than dealing with my own, even one at a time. I lapsed into obsession again as a refuge. After the diagnoses had taken place, even when when I managed to be out of the house at an autism conference, during every break in the presentations, I was back to writing dialog for a world into which I had a safe retreat. My full day's absence attending that conference caused such a regression in Don's behavior that I didn't dare stay away from him for much more than the time it took to shop for groceries. My TV oriented stories were the only place I could hide, and eventually they forged the escape hatch to my freedom.

A year after my self-imposed isolation, the fan club of the actor in the show I was writing about was having a writathon for those who were similarly obsessed. I desperately wanted to go and my dear husband Jim agreed to stay with the kids for a day while I did so. I drove for an hour and a half to reach a park in Arcadia where fans ate and chattered enthusiastically. When it came to the actual writing, when faced with a blank page I was the only one of the group who could summon the muse to put pen to paper. It began to rain and someone held an umbrella over my head while I crafted dialog for our hero. I made friends that day outside the circle of the autism community. It was wonderful and exhilarating.

My stomach was in my throat as I returned home, dreading what I might find, but Don was fine and my husband had survived the day. My way back to the world had opened wide. I found a job working a late swing shift in a medical lab, so I could sleep while the kids were at school. Our family was all together at dinner and my husband watched the boys in the evenings. I still had a chance to do my work for autism, especially after I shifted to a part time day job during the hours the boys were gone. I needed a writing obsession less and less and had very little time for one in any case. My partial ownership in a company came along. I still had legal pads on my desk for when I had a few minutes to spin a piece of a saga, but they were often buried under stacks of other things. The most important piece of writing I did was the Cheerful Chemist's Gluten Free Casein Free Cookbook. My family and Sunday School class served as guinea pigs for my recipes. The late Dr. Bernard Rimland wrote the introduction, edited, and distributed it through the Autism Research Institute (ARI) after assuring himself of quality through extensive personal sampling.

Life was working until the technology bubble burst and it became evident that my husband's job would be disappearing. The real estate bubble had yet to follow and living in Southern California was expensive. A satellite operation of my company, in Ohio, was working with a potential customer in Kentucky. I had been flying out on weekends to troubleshoot formulation and production problems but 9/11 hit and no one was flying anywhere for a while. Our customer decided that if we would have any chance of doing business, I would have to be in Ohio. My husband and I decided to relocate.

By that time the boys were theoretically adults. JJ was about to graduate from a combination of a christian college where our pastor was a professor, and a state university, with bachelors in both christian leadership and mechanical engineering, something not done before nor probably since. He decided to go with us. Don still had time left in public school. I was in contact with the special education direction in the small city to which were moving and she was prepared when Don started attending school there.

At first the move to Ohio seemed to be going well. We had moved at the end of May and the climate was similar to what Don had been accustomed, except that everything was green, a color he seemed to find calming. School had yet to start, but JJ and my husband were at home with Don. My husband was consulting, but his hours were largely his own. Our financial positions in the family had switched. I was now the major breadwinner. We had found a house only two miles from my lab. I still came home to make lunch, but during the day, with some help from JJ, my husband was the major caregiver.

In the Fall it seemed like things were really looking up. In Ohio, Don was able to have a dedicated aide, something he could never have in California. It turned out he needed one --- and it helped that the aide was big, male, and strong. Don had gotten increasingly violent, both at school and at home. He was now the largest member of the family at six feet tall and over two hundred pounds. At home I was his primary target. He would hit, punch, or more often pinch or bite. When he went on a rampage he would hunt for me until I had to lock myself in a room or in extreme cases hide in the small space under the basement stairs where no one else, especially Don, would fit. My husband did the best he could to protect me, sometimes putting himself between me and Don, but more often than not he couldn't get there fast enough. I wore nothing but long sleeves regardless of temperature, to cover the bruises on my arms. JJ did the best he could to help, but his brother often terrified him. I couldn't blame him. Don terrified me too.

We had discovered years earlier that Don was intensely sensitive to MSG. It was an accidental discovery. It has always given me headaches and one day I discovered that my headache corresponded exactly with violent behavior from Don. I eliminated all MSG from our household, developing my own recipes to replace Don's favorite foods that contained it. Don's violent behaviors immediately decreased by about seventy percent. It was this experience that stoked my interest in special dietary needs.

After months of battering in Ohio, I discovered that the food Don had demanded for his lunches in Ohio was full of MSG. We changed the situation and life became a lot more livable. There were still violent incidents, but they were occasional instead of almost daily. Eventually the situation improved even more when I found another approach to to controlling excess glutamate. Glutamate serves as an important neurotransmitter. Some medications affect it, including the Depakote Don was taking to control seizure activity. In a chemical journal that was part of my regular reading, I stumbled on the use of n-acetyl cysteine to control glutamate. N-acetyl cysteine (N.A.C.) is an amino acid pharmaceutical that is used to loosen mucus plugs and also is the antidote to Tylenol poisoning. It is a precursor to the amino acid glutathione. Glutathione complexes with glutamate in the liver, tying it up. The research I read related to disorders other than autism, but the biochemistry fit. While N.A.C. was available by prescription, it was also available over the counter at health food stores and on the internet. My research revealed no serious side effects or interactions. I talked to Don's doctor and sent him copies of research from two major universities. He didn't say no to a prescription, but we didn't get one either. I bought some N.A.C. at a local store. I tried it on myself first to make sure there were no untoward effects. I was happily surprised that it helped keep me from getting locked into unwanted loops of unpleasant and frightening thoughts. I started Don on N.A.C. and let his doctor know I had done so. His behaviors improved further and we were able to discontinue two prescription drugs the doctor had tried with less than great success, to control his remaining violent incidents.

Even though things finally improved with Don, the financial situation of our family seemed aimed for a downhill slide. Things had been on the edge since our move to Ohio. Even though I was acting as Q.C. Manager for both my little company and the two others owned by my majority partner, as well as a formulator, I was being paid twenty-five percent less than I had been promised. With my husband's contribution severely curtailed, things were tight and threatened to become tighter. I addition, Don was eligible for only one more year of school after which he was with my husband all day, hindering his ability to pursue other opportunities. We had yet to become eligible for respite, and special needs sitters were beyond our means. JJ had started graduate school and his time to help us with his brother was limited. Once more I retreated into a make believe world, only this time I was using a keyboard instead of a pen, a connecting with others on the internet. My first online effort involved writing part of a multi-author online story featuring my favorite vampire. It was a foreshadowing of things to come.

I prayed for divine intervention and for a while it seemed that God had sent an angel. We had a buyer for my partner's part of our little company. I was suddenly working for only one company instead of three, but making slightly more money. My lab was now located too far from our house to go home at lunchtime but the commute was still fairly short. My new partner was determined to put us on the road to going public. The journey was exhilarating. My work earned multiple patents both in the United States and abroad. As the sole inventor my resume looked very impressive. There was a publicity blitz resulting in interviews for newspapers and magazines as well as an appearance on Tech Trax on the Microsoft website. I was even interviewed on Ecuadoran radio. With the publicity came a flurry of awards for my technology. We received multiple offers for acquisition which would have resulted in receiving stock eligible to be traded on well known exchanges. As the minority partner, I wouldn't have been really rich, but I would have been comfortable. My partner turned the offers down. He wanted to go public by way of a reverse merger, a procedure which yields failure more often than it yields success. We did it anyway, and for a while I was doing pretty well. I was making more money than my husband ever had. We could afford some help with Don. Times seemed pretty good. I was pouring all my creative energy into company business and my writing fell off to almost nothing.

Some of the specifics are still before a judge, but stock fraud ensued and eventually our company was forced into bankruptcy. Everything I'd built for decades was wrenched away. I needed my writing more than any time except the earliest years after my sons' diagnoses. I became a daily part of the online fanfic community with positive reviews giving me confidence to try something more mainstream. By this time JJ had earned both a masters and a PhD. and had moved to another state to work. We had worked our way up a waiting list and Don was housed in an apartment five minutes from our house with one other young man with autism, and round the clock staff. He is now in a house, also with one other person and round the clock staff. We speak on the phone every day and I see him at least once a week.

Following the time honored advice of writing about what I know, I wrote about characters on the autism spectrum. My first novel, Singing the Solution is about an obviously ASD detective who usually sings because it's easier for him than talking. My hero, Cary Ellis, has a number of sensory and social challenges. He is highly competent at his job, in part because of autism related skills, although his partner Tamar usually does all the talking. He became a cop because although he was able to communicate and big and strong enough to defend himself, he found himself coming to the aid more vulnerable disabled classmates who were threatened bullying and even molestation. He sees himself as a protector. He collects comics and is obsessed with an anime show called Star Strider which gives him clues to solving cases. He's become quite adept at cooking to avoid textures he can't tolerate. Tamar and Cary learn from each other. She helps him in the social arena and he helps her learn to cook and opens up areas of interest she hadn't known existed. Singing the Solution is serialized on

For my second book I became both more ambitious and more steeped in the autism theme. Based on all of both the strengths and weaknesses of individuals with autism and drawing on popular mythology, a high functioning individual with autism becomes a vampire. Rather than becoming a killer, he finds a way for both himself and many others to survive while hurting no one. It was written with both persons with autism and those who love them in mind, and miracle of miracles, a publisher agreed it was worth sharing with the world. That novel, Dark Awakening, is published by Snow Leopard and is now available on Amazon. I have a new gluten free casein free cookbook that is available on Amazon as well and I'm working on a sequel to Dark Awakening. A new short story featuring Cary and Tamar has also been included in an anthology by Centum Press, 100 Voices Writing for the autism community has now become the guiding direction for my life.