First, it helped that we had put in a pool in our backyard. We wanted to get him more used to water and getting wet. He was due to be baptized by the end of the year and we just couldn’t see how that would come about unless he had a good deal more exposure to being underwater. (As it turned out, the baptism was more than memorable. I promise to write about it later, but for now, be assured that he was baptized.) Besides, he had begun to be afraid of the outdoors (by now, we had figured out that it was all the gnats and flies and anything else that flew–other than birds and butterflies–that bothered him to the point of panic) and he needed fresh air and sunshine.

Jason pushing the raft with Allison and his cousin, Cole

As you can see from the picture above, the pool worked wonders–as long as he had his goggles. Sure, he’d still run from the sliding back door of the house and into the pool, trying his best to avoid any bees or flies, and as soon as he was done swimming, he’d run back inside again…but at least he got some fresh air and sunshine while immersed in the water. Believe it or not, he developed a tan for one of the few periods in his life.

That summer we also tried to push him regarding his food issues. We weren’t very successful, but Michael did get him to help make cupcakes one day. I’m not sure that he took a bite of one when they were done, but at least he’d cracked open an egg and dealt with getting his fingers slightly slimed with the egg white.

Jason cracks an egg to help his father make cupcakes

Another big hurdle was his fear of dogs. A visit from an old friend who had the most gentle Labrador (I think–I’m not a dog expert) proved to my son that not all dogs get excited and jump all over you. After about half an hour of watching the dog from inside the house, Jason ventured out. When the dog stayed where he was, Jason approached and softly petted his hind quarters. Still, the dog didn’t get up. So Jason began petting his head. The dog sat up at that point, but that was all. Soon, they were fast friends. (Unfortunately, the visit didn’t last long. Jason’s still uncomfortable around dogs unless they’re quiet and calm.)

Jason with my friend’s dog

As Second Grade began, his social challenges had diminished in terms of being bullied or harassed on the playground. This was mainly due to his making friends with one boy–Adam–who was strong and athletic and kind of looked out for him. He continued to be mainstreamed academically, except for Math. He received special math tutoring with the Resource Specialist four times a week, and went to speech therapy twice a week.

He still had a lot to learn about getting along with his peers in terms of his words as well as his actions. In some areas, he had improved, and in others he had regressed. These were the notes I made and shared with his teacher in September of 2001:

Senses

• He seems a bit less ticklish now…at least “soft” tickling no longer feels like scratching to him.
• He’s quite bothered again by the feel of certain inner seams and tags in clothing…the seams in socks bother him a great deal (there are only four pair he will consent to wear at present).
• He’s gradually getting a bit better now about dealing with a drop of water on his clothing. He put up with a small drop last week for the first time, though he tried to blow it dry first.

Communication

• Because of current speech therapy, he’s beginning to learn what certain idioms and sayings mean, but he still takes things quite literally. Now and then, however, he appears to catch on to the meaning of an expression without it being explained to him…particularly if he’s seen it used in context in a video.
• He’s now reading at a 4th grade level, though his comprehension is not at that level.
• He’s beginning to formulate written sentences on his own better if you give him some parameters within which to work.
• He’s back to watching more videos again and playing less on the computer (except on Sundays)…so we’re getting a lot of quotes from “The Swan Princess” and “Sailor Moon” lately.

Motor Skills and Movement

• He’s doing a bit better with Legos.
• I haven’t noticed him stemming much anymore…except to bounce around on his big ball every few days or so.
• He was assessed for Adaptive PE and the School District Specialist found him to be on the borderline, so she recommended keeping him in regular PE for the time being (which he gets twice a week with his class…I don’t know how he’s doing there).

Social Interaction

• He’s got a few friends now…particularly a girl in his class and Adam, a boy in another second grade class (they were in the same class last year). According to his teacher, however, he’s quite jealous and possessive of Erica, for example…to the point of being rude to any other boy who appears to be a rival. As his teacher put it, he can’t quite accept that Erica can have other friends as well as him.
• His social interaction is still mainly geared towards other toy or pet opportunities (that is, he wants to go play at Adam’s house so he can play with his cat…or he wants to go to Becca’s house to play with her toy swan).
• Does not do well in large, rambunctious groups, as I’ve found out during the school’s annual Skills Day and their most recent attempt at a regular grade-wide PE class…he just shuts down and refuses to participate.

Obsessions/Preoccupations

• His current obsessions are Sailor Moon and Princess Odette (from “The Swan Princess”)…also Powerpuff Girls to some extent.

Routines

• He no longer insists on putting the right sock on before the left one…but does stick with it for the shoes.
• A happy addition to his morning and nighttime routines: I succeeded in getting him accustomed to using an electric toothbrush.

By the end of his Second Grade year, he was the happy little boy who had disappeared for a while at the beginning of First Grade. School was fun again and he had made some friends.

Jason with Erica. He still goes for taller women.

Jason with a friend from school

I think one of the highlights of 2002, for him (and us), was his successful “Harry Potter” Birthday Party. Six friends from school came and they all loved it…everything from the castle entry to the sorting hat to Potions Class and the Snitch game. Allison even deemed it “cool” enough for a twelve-year-old to attend.

Jason holding Hedwig in front of Hogwarts Castle

Allison and Jason at entrance to Hogwarts

Jason with his guests at the entrance to Hogwarts. (Adam is the blond boy lower left)

Jason with his Harry Potter Birthday Cake

Tomorrow, I’ll post about his baptism and his general response to church in comparison with school.

I realize that may have been his particular obsession or interest, but one of the things I worried over most about Jason’s disability was whether, or how much, it would impact his involvement in our church.

LDS children are raised with certain expectations, or guided toward particular milestones, if you will, from an early age. Blessed at birth, usually by their fathers who hold priesthood authority, they are taught the gospel each Sunday in Primary from the age of three. When they reach the age of eight, they are given the choice to be baptized as members of The Church of Jesus Christ of Latter-day Saints. After baptism and confirmation as members of the church, again usually at the hands of their fathers and other priesthood holders, they continue learning simple lessons of the gospel on Sundays in Primary until they turn twelve.

At that point, the girls advance into the Young Women program. The boys, now part of the Young Men program, are ordained to be deacons in the Aaronic Priesthood, and they begin attending Priesthood Meetings. (At age twelve, both girls and boys begin attending youth Sunday School classes.) One of the duties of deacons is to help pass the Sacrament to the general congregation on Sundays. When each boy turns fourteen, he’s ordained to be a teacher, at which point he helps to prepare the Sacrament and he becomes involved with home visits. Then, at sixteen, he’s ordained to be a priest. This means he may now be worthy to bless the Sacrament and even perform the ordinance of baptism.

The next major milestone for an LDS young man is to serve a two-year mission for the church when he turns 19. (Young women may serve an 18-month mission, if they choose, once they are 21.) In preparation for the mission, the youth, once deemed worthy, enters the holy temple to make certain sacred covenants with the Lord and to receive necessary instruction.

The last milestone is a temple marriage, binding for eternity, not just this life.

Given all of this, you might well understand my concern about my son. Would he develop enough of a love for God to want to pursue all these goals? Would he gain a testimony? How much would he be able to love and serve others?

It can be difficult for those with an autistic spectrum disorder to empathize because they are so caught up in their own world. There’s a whole theory of mind problem, about which scientists have done experiments, proving that it’s nigh impossible for these children to put themselves in another’s shoes.

This is why that autobiography gave me so much hope.

So we continued to take Jason to church every Sunday and I helped him prepare and give talks in Primary. We went to all the ward activities, but usually couldn’t stay the whole time because the noise and numbers of people would get to him after a while…or if it was held outside, our stay was even shorter. Michael or I would take Jason home while the other remained with Allison.

Jason and I on his baptism day

By the time he turned eight, most of the adults in our ward knew he had been diagnosed with AS or at least that he was a bit “different.” I was nervous about his baptism. He enjoyed swimming in our pool, but I kept thinking we ought to borrow one of the white baptismal outfits and let him try it out in our pool to get used to the feel of having wet clothing on. We never did, though.

We got to the day of his baptism. In our stake in Riverside, CA, they would have one service for all the children being baptized on a Saturday. Because there were four scheduled to enter the waters of baptism that day, and so many had come to share in the experience, we had the service in the Stake Center chapel. Jason, who had a beautiful boy soprano voice, had volunteered to sing a solo, “When Jesus Christ Was Baptized,” and he did it perfectly. Then we went back to where the font was.

Seeing the font full of water, he began to get nervous and elected to go last. The longer he had to wait, the more nervous he got. When it was his turn, it was all Michael could do to convince him to step out of the Men’s changing room and step into the water. It must have taken a good ten or fifteen minutes (though it seemed longer) of hearing his high-pitched voice saying, “No, no…I don’t want to!” as Michael gently tried to convince him it would be all right.

At about the moment the Stake President, who was there, was ready to call it off and give us permission to baptize him later in our backyard pool, Jason and Michael finally came out and took the first step down into the warm water. It took another five minutes to get him to take the next step. As the water begin to soak through the bottoms of his pant legs, he said, “It feels funny. I don’t like it.” He almost turned around again, but somehow Michael got him to step all the way down, then quickly baptized him. I can tell you, practically everyone in the congregation felt like cheering at that point (particularly the Stake President).

One milestone down.

We had a few more years to breathe before the next one. (I’m not even mentioning the Boy Scout program, which turned out to be a total wash, as far as Jason was concerned. He stuck it out with Cub Scouts and Frank Gonzalez was a terrifically patient Webelos Leader. But he couldn’t stand the camp outs once he became a Boy Scout.)

The real challenge at church was his peers, but I can’t really blame them, looking back now. I should have done the same thing with them that I ended up doing with his classmates at school in fifth grade.

When his fifth grade class began studying the brain, I saw a golden opportunity to nip a growing problem in the bud. Up until then, his classmates had been pretty supportive, but in fifth grade the teasing was beginning again. One day when Jason had had a particularly hard time of it, he asked me why he felt so different from everyone else.

This was the day I’d been waiting for. All the experts had advised not telling your child about his diagnosis until he seemed ready for it. I knew he was ready. So, Michael and I sat down with him and, using a simple book I’d found that was written on a child’s level, we told him about Asperger’s syndrome. I’m not sure how he took it at first, but once I arranged to give a special presentation about it to his fifth grade class, he began to feel almost empowered in a way. Another class sat in on it, as well, and they were all enthralled. Suddenly, they understood why Jason behaved the ways he did and they no longer made fun of him. Instead, they stuck up for him.

If only I had insisted on giving that same presentation to his peers (and their parents) in our ward. It would have saved a lot of heartache, I think.

In any case, when Jason turned twelve he was ordained a deacon. He seemed to be the littlest deacon up there passing the Sacrament, but they were kind and gave him an easy route to remember.

Some eight months later, we moved to Washington and, as I said before, into a ward that already knew their way around Asperger’s.

Are there still challenges? Sure. He still hates Boy Scouts and camping. He’s grown shy in front of an audience, so he has yet to give a talk or bear his testimony (though he came close) in Sacrament Meeting. He’ll sing in the choir, but refuses to sing a solo even though he now has a beautiful bass voice. He goes to the temple with the youth to do temple baptisms, but only does the confirmations.

But as a priest now, he blesses the Sacrament with sincere power and authority. And he accompanies his father on home teaching visits, even giving the lesson now and then.

And in January, after he’s turned 19, he plans on serving a two-year local service mission.

Who knows? Perhaps a temple marriage yet lies in his future.

Only Jason can answer the most important questions about how he really feels about God and Jesus Christ and his relationship to them. All I know is that he’s come a long way spiritually from that little boy of eight who didn’t want to come out of the changing room and step into the water.

Jason in his Senior Picture at one of his favorite haunts–Barnes & Noble

As I said yesterday, he’s planning on serving a local service mission for the Church beginning in January after he’s turned 19. That means he’ll still be living here with us and going to his assigned work area every day except Sunday, I imagine. You see? I haven’t even researched all the options thoroughly yet. I know that Alane’s son worked at the Bishop’s Storehouse, for example, but I’m not sure if that was five or six days a week.

Until then, Jason is planning on beginning the Pathways Program offered through BYU-Idaho. It’s perfect for young men and women who have difficulties fitting in socially or being independent, because it allows them to do most of their learning online while still gaining opportunities for socializing at their local Church Institute. An ACT score wasn’t required (thankfully!), and once he succeeds in completing three quarters, he can then take any courses he likes  that are offered by BYU-Idaho online.

He’ll start attending Institute twice a week this summer and then begin his first quarter in September. The mission will interrupt his studies come January, but he can pick up where he left off afterward, and finish the two remaining quarters.

We’re hoping he’ll be able to find some kind of employment this summer, as well. Not only that, but he needs to learn to drive. He’s been fighting it, but it’s a skill he absolutely needs for his own independence. I’ll also be working with him on a few other life skills this summer, including finally learning to cook for himself.

From this point on, I plan to blog about Jason’s progress only twice a month (probably every second and fourth Friday) in order to document his entry into adulthood and independent living. I appreciate all of you who have read and followed his journey thus far, and particularly those of you who have left comments either here or on Facebook.

One last point: Jason wouldn’t have done nearly as well, had we not had the support of friends like Lisa Gonzalez (a good friend and daycare provider back in Riverside, CA who treated Jason like one of her own), the terrific staff and faculty of Sunshine Early Childhood Center and Ben Franklin Elementary School in Riverside, the wonderful Riverside Children’s Theatre, so many friends in Orangecrest Ward, the very helpful staff and faculty at Enterprise Middle School and Richland High School here in Richland, WA (particularly Mr. Kopf), the Richland High School Choir, and the many wonderful members of Hill View Ward.

Three young men, in particular, made a defining difference for Jason once he started high school: Braden Nelson, Casey Hare, and Jackson Ostler.

These three were some of the most popular LDS seniors at the school and they took Jason under their wing and loved him and accepted him. Because they did, others did, too. And Lily Harris invited him to one of the formal dances, where they both had a wonderful time. I hope any teenagers who might be reading this will take a lesson from this. You CAN make a huge difference in someone else’s life.

Lily is now studying at BYU-Idaho and all three young men are valiantly serving missions right now in Mexico and South America. They are due to return this summer and I know Jason can’t wait to welcome them home.

FOX News    March 28, 2011

 April is Autism Awareness Month, and you may have already heard countless reports about the shocking fact that 1 in 110 – a full one percent – of American children have autism.

 Because the majority of individuals with autism spectrum disorders (ASDs) are still under the age of 20, a great deal of attention has been focused on education.

 But the problems facing individuals with autism does not end when they age out of school. In many ways they become even more demanding, difficult and costly.

In 2009, a Washington Post op-ed put forth a thought-provoking question: What coming social expenditure will cost more than a third of this year’s
budget for the Department of Health and Human Services and be larger than the entire budget of the Energy Department?

Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually…read more…“

Technical Assistance Collaborative, Inc. Consortium for Citizens with Disabilities, Housing Task Force June 2011

Read More…

New York Times  September 18, 2011

For weeks, Justin Canha, a high school student with autism, a love of cartoons and a gift for drawing, had rehearsed for the job interview at a local animation studio.  As planned, he arrived that morning with a portfolio of his comic strips and charcoal sketches, some of which were sold through a Chelsea gallery. Kate Stanton-Paule, the teacher who had set up the meeting, accompanied him. But his first words upon entering the office were, like most things involving Justin, not in the script.

“Hello, everybody,” he announced, loud enough to be heard behind the company president’s door. “This is going to be my new job, and you are going to be my new friends…..”

The software testers at Aspiritech are a collection of characters. Katie Levin talks nonstop. Brian Tozzo hates driving. Jamie Specht is bothered by bright lights, vacuum cleaners and the feel of carpeting against her skin. Rider Hallenstein draws cartoons of himself as a DeLorean sports car. Rick Alexander finds it unnerving to sit near other people.

This is the unusual workforce of a U.S. startup that specializes in finding software bugs by harnessing the talents of young adults with autism.

New York Times   January 19, 2012

 Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.

The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions…read more…

This is the amazing story of a little girl with autism and how the dedication and perseverance of her parents changed not only there lives but the lives of countless others who will view this story.

March 19, 2012

U.S. families with autistic children earn nearly $18,000 less than parents of normally developing kids, according to a new report.

The gap is mainly due to mothers not having a job or working fewer hours, researchers found.
“The needs of children with autism really straddle a number of service systems and there is a tremendous amount of finger pointing in terms of who’s going to pay,” said David Mandell, associate director of the Center for Autism Research at The Children’s Hospital of Philadelphia.

“Mothers are leaving the workforce to cobble this care together for their kids…more…