After our older son, Isaiah, was diagnosed with autism, we were both shocked. Although we knew there was something wrong with him, we did not expect a diagnosis of autism. When I read the final report of his diagnosis, I came to the stark realization of the severity of his autism and how it might impact our lives. At the time of his diagnosis, we were taking classes in seminary in preparation for becoming medical missionaries overseas—but when Isaiah was diagnosed, it became obvious these plans would need to change so that Isaiah could receive the therapy and care that he required.

I was pregnant with our second son, Joshua, at the time, so after Isaiah received his diagnosis I searched the internet for a cure and for a way to prevent autism in the baby developing in my womb. I discovered an online support group of mothers just like me who were having success in treating their children’s autism with biomedical interventions. My husband was quite skeptical and he asked his medical colleagues about my findings. Dan was told that there was no research on autism biomedical treatments or diets, and that we should plan for our son to eventually be placed in an institution.

I insisted that we try these biomedical treatments, and Dan worked overtime to pay for them. Once he began seeing improvements in our sons, and attended an Autism Research Institute conference, he began to search the medical literature for himself and found that the research was out there—several thousand research articles on autism and potential treatments, in fact. Since then, he has made it his mission to write autism review articles summarizing the medical literature so that other physicians will see that there are treatments for the underlying medical issues affecting children with autism.

Because of the time commitments of Dan’s research, I have had to make sacrifices. Two years ago, when I was really struggling with feeling lonely, my cousin Isabelle told me, “A spouse can’t possibly meet all of your needs. You also have to have your needs met through friends, support groups, your church and God.” Her words of wisdom helped me tremendously, but we still had struggles and went through marriage counseling at our church. Our counselors suggested that I write down 10 ways that Dan could express love to me, and Dan did the same. It ended up just being simple things… for me, it was just being able to sleep in on a Saturday morning, or having my husband clean up the kitchen. For Dan, it was simple things as well. All of the things we listed were inexpensive and not difficult to do.

I also started a weekly prayer group for parents of children with autism, and we meet over coffee and snacks to talk and then pray about things going on in our lives. We get together often with our kids, since we all understand autism and don’t judge each other, and it has been one of the biggest blessings in my life. I am also blessed with a husband who has always worked very hard to help support our children’s ridiculously expensive medical needs. I try to remember that when I get upset at him for silly things! No one will love our boys as much as the two of us, and together we are stronger. We now feel that Isaiah was given to us by God to help direct us into a new career path—helping other children with autism and their parents. We are blessed to have two children with autism, and our goal is to be a blessing to others who are similarly affected.

Six months ago, Billy asked us for a mobile phone—I think they are called cell phones in the US.  We were very nervous about getting him one as he is so vulnerable.  It wasn’t that long ago that Billy wanted to call an ambulance for the smallest thing—any sort of problem, he would head for a phone to call an ambulance.

One morning around 5:00 a.m., I woke to him screaming, “Mum, Dad–it’s an emergency, call an ambulance!” He was clearly upset so I leapt out of bed and ran in the direction of his screams. I found him in the kitchen with the fridge open.

Me: “Billy, what is the matter?”

Billy: “There’s no butter, call an ambulance!”

With a heavy sigh (mainly of relief that he didn’t really need an ambulance but also of worry that he may have called an ambulance and wasted their valuable time), I threw on some jeans, slung on Bella’s Ugg boots and bleary-eyed, got into my car and drove round and round until I found a shop that was open and sold butter.  Upon returning home, I sat down and showed Billy through books and pictures that an ambulance was for a medical emergency, not a little issue like not having butter in the house.  It didn’t take long to get him to understand–but with Billy, you need to explain everything, often only once, but if you leave something out while explaining in depth from beginning to end, even things that seem very obvious, Billy won’t fully understand.

We made sure that Billy has only family and friends on his phone, and he knows to wait and see the name come up on the display first before answering.  It’s fabulous to have this communication with him, especially as he is away from Monday evening until Friday at 3:30 p.m. I have saved every text he has sent me, mainly because I marvel at my boy with autism being able to communicate so fluently with me.  I agree this is a little over the top but let’s not forget the doctors warning to Jon and myself 14 years ago:

“Billy will never speak, be toilet trained or live a life with much purpose.”

So excuse me if I just hold on to the one Billy sent me last night:

“Night Mum, see you on Friday. I love you, sleep dreams.”

Lucky me!

Billy approached Jon and me a month ago to say he would like a party with girls and dancing which is not an issue–one of the perks of having an older sister. Bella is instructed to bring as many as possible and family/friends have been asked too. Billy, however, has other ideas. He tells us he has his own list of girls that will be coming. This is the problem.

Me: “Who is coming to your party, Billy?”

Billy: “Linda Smeltzer, Sarah Green, Jackie Doe…” The list went on.

Me: “Billy, Linda lives in America so she won’t be able to come. Who are the others?”

It turns out that the others are teachers, cleaners, cooks – even the headmistress and deputy of his school. Not one person is his own age. He just loves all the staff.

Me: “Billy, they are all staff so will be unlikely to come.”

Billy: “When they are at my house they are not staff, they are Billy’s friends.”

Can’t argue with this but Sunday will come and there will be no Linda Smeltzer or any of the others he is so confident will come.

Billy remembers the smallest things. He bounded out of bed this morning, announced that he was 16, listed Linda and crew for the 6th of May then IPad, 10th of May, then said, “I can go to Hampton Gym now, I am 16!” Billy was told by our local gym 18 months ago that he would have to wait until he was 16 to use the gym. He hardly mentioned it again until today.

I have to say, apart from the impending party, this is the first birthday of Billy’s that I haven’t had a sinking feeling about my son turning another year older. Previous birthdays had filled me with panic: Was I doing enough for him? What will happen when he gets older? My questions, panic and desperation used to ruin every birthday Billy had.

But as I watched him open his cards and carefully read every line people had written (this is very new–for years, he would open the envelope, take out the card, and without even looking at it, dump it on the side) I was full of pride–even when he said,“ Mum, this isn’t very many presents.” I laughed and reminded him of his IPad (10th of May) that costs big money. It was just sheer joy to see all the family at the table and just for now, autism wasn’t a problem. It was (dare I say it?) fun.

As for the future? I have a plan, a new plan for Billy. (I highly recommend plans, they will change but so will your child.) I know now not to announce plans before they start to really happen. But, I will write on this blog as and when they do–and this one is a goodie.

Wish us luck for the party…

Despite the ban, Billy sometimes gets away with creating his Scooby Doo sandwich if Jon and I are distracted — and much of the time we are. If anyone challenges Billy at any time during the making of the sandwich, he or she is subjected to hours of Billy losing it big time, and mostly it’s extremely personal to whoever is challenging him.

I am going to admit to some seriously bad parenting now. On a particular Friday not so long ago, after everyone greeted Billy in the usual way, I ran to answer the phone and Jon legged it back to his computer. All was quiet for around 30 minutes while Jon and I busily worked away; we could vaguely hear Billy singing in the background. Next minute, Toby comes running in saying that Billy had made the biggest Scooby Doo sandwich ever–he said we just wouldn’t believe how enormous it was.  Pure dread ran through me. It’s Friday and I’ve had a remarkably good day. Did I really need what I knew was about to come? No thank you–so I did a bad, bad thing.

Madly grabbing a phone I asked my 14-year-old son, “Toby, would you get dad as I’m on hold for a really important conference call to do with work?”  I ushered him out, shut the door, and waited.

As predicted, Jon got a real battering of how he was not Billy’s favourite parent and how marvelous a mum I was; Dad was bad, Mum was good.  Dad was evil, Mum was perfect.  It went on and on.  It’s Billy’s favourite trick in the book and it hurts like mad when you get the bad bits and dare I say it (secretly) it shouldn’t but just does feel fabulous to hear those wonderful things said about you from Billy.  He never says these things unless he is angry, and the other thing about Billy being so cross is that his language becomes so fluent.

Now, what I should have done–what I know so well I should have done–is opened the door and stood right by Jon.  Yes, that is what I should have done (I even wrote a chapter in our book about exactly this).  What I actually did do, behind my door with my fake call, would horrify all therapists, most of my friends and certainly my family. What I was doing was listening to my son with autism speaking fantastically –and all about marvelous me.

Billy eventually calmed down, had his sandwich halved (have to say it was humongous) and I crept out to tell Jon how brilliant he was at handling the situation.

I promise, I will never do it again…

Billy had behaved beautifully for the whole week, loving the attention he got from the very friendly American people; he was calm, happy and excited to be in this new environment.

We took a short flight to Dallas from Austin and despite large lines for security, Billy handled the waiting well. We eventually boarded our flight to the UK and this is when things changed dramatically. I sat with Bella and Billy with extra leg room (a good tip here for other parents–ring in advance and tell them your child with autism could kick the seat ahead and they will quickly give you a seat where no one is in front) while Jon and Toby had seats a few rows back.  It was an overnight flight, and Billy happily pulled blankets over him ready for the night. In front of us was a screen mapping the journey. This is when it started.

Billy: “Mum, we have 9 hours and 40 minutes until we land in Heathrow, London, England.”

Me: “Yes, Billy, that is right.”

Billy: “Mum, we have 9 hours and 39 minutes until we land in Heathrow, London, England.”

Then one minute later: “Mum, we have 9 hours and 38 minutes until we land in Heathrow, London, England.”

Despite my best efforts I couldn’t stop him–he was off and nothing was going to stop him announcing to the plane on the minute, every minute, the length of our journey. After a few hours of this I admit I started to lose it; I was tired and very conscious of the other passengers who, I have to say, hadn’t complained at all.

Me: “Billy, enough – people are trying to sleep. Come on, let’s sleep and wake up when it is 2 hours until we land.” (At least that would kill a few hours.)

Billy went bananas and screamed for his dad, telling me in no uncertain words who he preferred as a parent. (Jon amazingly slept through the whole thing with a blanket over his head.) To cut a long story short, nothing worked and Billy went through the entire flight announcing our minute-by-minute journey towards Heathrow. Is it a sign of the times that not one passenger complained?

Not one! We eventually made it home, the whole family exhausted–particularly Bella, me–and of course Billy, who was extremely pleased with himself.

We’ve been home now for two days and I just dropped Billy back to school. As I was leaving he said to me, “See you on Friday, Mum, and then it will be 72 hours until my birthday.”

Please no…

Polly Tommey is the Autism File Editor in Chief; she lives in London with her husband Jonathan who manages The Autism Clinic and their three children: Bella, 17; Billy, 15; and Toby, 14. Billy has autism.

In the midst of this swirling time, we’re teaching our kids every time we’re around them: teaching them how to let us know what they need, whether it’s with a communication device, words, sentences, sounds or gestures. We’re teaching them how to use the bathroom and all the steps that are involved, some with picture cues or videos. This is a natural part of our job as parents and caregivers—to teach. Many of us have taken that “natural” part of our parenting style and have expanded it by homeschooling.

Why Homeschool?

Some parents decide on homeschooling upon the birth of thier child, or for religious reasons. Others do it because the public and private school system fails to meet their child’s needs, or perhaps have taken away crucial services without notice. Overcrowded, understaffed classrooms and bullying are other issues.

Food issues also loom large. It seems to be the norm lately to use chemical candies and other fake sugar treats to promote math, reward success, and celebrate special occasions. The toxic food environment is a battle for parents trying to manage allergies and sensitivities. It’s more and more common to have a week where Johnny brings in artificially flavored chocolate circles that contain casein for the entire class, and it’s also Susie’s birthday, and the One Hundred’s Day party.

It means that within that week, a child with autism will have had two very processed, chemically laced mercury-coated big-box store cupcakes that caused out-of-control bowel issues due to the yeast beast overgrowth from the extra processed sugar… on top of the hyper child it created. Not much learning going on that week for sure, but a whole lot of pain for this family. If only the school was more organized and gave the parent the heads up and allowed alternatives to be made, per the IEP, all of this could be avoided.

For many families, attending school in the traditional manner has just gotten to be too much of a struggle to be practical. Our family began the journey four years ago, after our oldest child experienced an overcrowded and understaffed kindergarten classroom. There were no available enrichment programs to keep him interested, as he had mastered the skills being introduced in his class. In addition, he had an inexperienced teacher who wasn’t handling the situation well nor keeping control of the child who constantly used his hands on my son. He became increasingly bored as the year progressed, which is never a good situation. Moving wasn’t an option, so we chose to homeschool. Even though it wasn’t planned, it has worked out very well for our family, and currently we have four homeschooled children.

Homeschooling Considerations

It is important to consider the pros and cons involved before reaching a decision on homeschooling.

IS IT LEGAL?

Every state (and country outside of the U.S.) has its own laws regarding homeschooling. Some areas are completely hands off, like Illinois and Texas in the U.S., where no notification of any kind needs to occur to the school, district or state. You don’t have to turn in any records or materials proving that you are indeed teaching, and your child doesn’t have to take the state assessment exams.

Other states and countries require a parent to have a teaching degree and/or meet with a certified teacher bi-weekly. Some countries—for example, France—have made homeschooling illegal. Know your local laws before deciding to homeschool, as they may or may not be a deal breaker. Check with your local education department or the Home School Legal Defense Association (see Find Out More, p27).

DO YOU HAVE THE TIME?

You really need to be honest with yourself about this. Homeschooling doesn’t just take up your child’s time, it takes up yours too, and this can affect the entire family. I know families who would love to homeschool, but between working, therapy, traveling to appointments and wait times, caring for siblings and daily tasks, there’s no time to give or get. Others have successfully rearranged everything to fit homeschooling into the family schedule. Planning and teaching can take minimal time, but for others it can be very time consuming—it depends on your style and personality, in addition to what your goals are for that day, week, month and/or year.

Keep in mind that as you develop your teaching style, the more you’ll come to understand how best your child learns and the more organized the process becomes. For our family, the academic day is about three to four hours, and for Nick just a couple of hours at this point. I use every teachable moment I can, which doesn’t really take any more time than the task at hand. I focus largely on life skills for him at this point, like putting clothes on the right way, cleaning up after himself, washing himself in the tub, practicing good bathroom habits and sitting at the table during meals.

ARE SCHOOL SERVICES NECESSARY FOR YOUR CHILD?

School districts offer speech and occupational therapy for students with Individualized Education Programs (IEPs), in addition to other services. The number of minutes a child gets varies, with some receiving as little as 20 group minutes a week and some up to 30 minutes daily. School districts also offer social work interventions and specific modifications based upon the needs that have been identified.

Instead of utilizing school offered speech and occupational therapy, families frequently choose to use their health insurance plan to cover those needs. As we all know, however, not all health insurance plans are equal so make sure you check to see if you have limits on the number of sessions and what your cost is for those therapies. In a traditional school setting, some children have a one-on-one aide for various reasons. Homeschooling may eliminate this need, as we are constantly with our children and can assist them as required. If you still feel your child needs those services, you may still have that option while homeschooling, since some districts will let you utilize your child’s IEP at home. They will send the therapists to the home or ask your child to come for just those services. Check with your district.

WHAT SHOULD YOUR CHILD LEARN?

Once you’ve done the necessary research, decided that homeschooling is the best option for your family, and notified anyone you need to according to local laws, it’s time to work out what your child should learn, and what’s available to you in the way of support and resources.

Most states and countries have their own standards and benchmarks to categorize what should be learned and with what subject at what grade. Looking at those is a good place to start to get an idea of what skills the government has identified should be known or introduced at a particular grade. You truly need to consider your own child’s capabilities and what goals you feel they need to accomplish within that year. It may or may not align with what the government has stipulated. In addition to traditional academics, life skills—such as potty training, putting on appropriate clothes, independent feeding, and more—can be a part of or all of your goals and curriculum.

Social System

I know what you’re thinking—homeschooled kids lose out on social activities and have no idea on how to make friends. But actually, homeschooled children have as many, if not more, opportunities to be social than children at traditional schools. It also happens in a setting that allows parents to gently guide them into being successful socially.

Most local, state, and country educational goals don’t actually include socialization or manners—they’re weighed heavily towards academic subjects such as math and language arts. Socialization skills and manners are learned from other students and from the way teachers model them.

Many homeschooling families take the time to teach how to play with other children as we play along with them. We have the opportunity to model conversations and manners on a personal level, and to reiterate the emotional connection of friendship in a positive way to our children. Social opportunities are everywhere, and we get to take advantage of them at anytime we want. We get to choose where and when we want to socialize, and have the opportunity to surround ourselves with families who couldn’t care less that the food has to be GF/CF/SF… phew!

Need Support? No Problem!

Homeschooling support groups can be found everywhere, be they religious, secular, ability specific or otherwise. Even park districts and museums are offering homeschool classes just for our kids. Smaller class size means—in addition to being more hands-on—more opportunity to learn and socialize. Some areas offer co-op classes, discount memberships, and organized activities specific to homeschooled children.

Need some help in the house? Many homeschooling families have older children who can be utilized as “Mother’s Helpers” for little to no money. In addition, there are websites you can join to hire additional help, and don’t forget your local college: it can be a great way to find a student who is studying physical, speech or occupational therapy, or special education. Also check your Yahoo groups, Mothering.com, Meetup.com, Cafemom.com and Google to find local or online support.

You’ll be amazed how much support is out there, as homeschooling has been around for such a long time. Starting your own group may be a great option as well—that’s what I did in Chicago, and I’ll be forever grateful and bonded to those families, no matter where we move!

Homeschooling Nicholas

Our third child, Nicholas, who has autism, has done extremely well homeschooling. A lot of his learning we can do naturally through play and day-to-day tasks. Technology has helped as well—he enjoys the computer and hand-held devices. The repetition designed into those games have helped him master his ABCs, letter sounds, counting to 100 and more.

Homeschooling has come a long way, with many states and countries offering a free curriculum and all the supplies to go with it, from the textbooks, a computer and stationery to support as well, via online education (see Find Out More, below). The online curricula they offer can be modified for your child, preferably in consultation with a certified teacher from your area.

There are more options, like purchasing all-in-one curricula independently. You can select from the traditional textbook form, online and even video curricula that has a teacher going step by step with your student. Complete curricula can be bought new and used, so if you choose to select an all-in-one you might want to consider looking for a deal on a Yahoo or Google group, and even Ebay. Prices range from under $100 used to over $1,000 new. You need to consider how your child learns—is he or she visual, auditory or even both—when selecting a premade curriculum. There are many styles of homeschooling, including traditional, Charlotte Mason, Thomas Jefferson, Unschooling and others, in addition to eclectic approaches that take something from each of those.

Our family uses a set Math curriculum—the University of Chicago’s Everyday Mathematics—and Handwriting Without Tears, as well as teacher-store bought lesson units and units I’ve created myself or purchased online. In August, I’ll be starting Nick on a lap book system. This style of lesson is very visual, allowing for art to be utilized and offering the freedom to not do it everyday.

In discussing the alleviation of autism traits through diet, parents often refer to the existence of a “gut-brain” connection which is also supported by science.  A Norwegian research team published a paper in 2010 which concluded that, “An effect of diet on excreted compounds and behavior has been found. A gut-to-brain axis is both possible and probable.” [ii]

While the success stories of dietary interventions offer hope to families affected by autism, following the restrictions imposed isn’t always easy, especially during holidays and birthday celebrations when off-limits dietary temptations abound.  However, with the growing popularity of special diets within the autism community and beyond, healthful and delicious options to forbidden treats have become much more readily available to consumers. Increased options provide for increased likelihood of sticking to a GF/CF or other special diet, and there are some strategies parents have found helpful in maximizing the potential for success:

Explain the diet: Let anyone who has regular contact with your child, including friends and extended family members, know about the diet and encourage their support.

Plan ahead: Bake a batch of GF/CF cupcakes to keep in your freezer. When your child is invited to a birthday or other party, you can defrost one, add icing, and send this along to the party. Explain your plan with the party hostess in advance.

Establish a repertoire: As you discover your favorite special recipes, share and exchange with family and friends to increase safe options at potluck gatherings.

Be creative with treats: Remember that a “treat” doesn’t have to be something edible. For party favors or Halloween treats, consider stickers, pens, and inexpensive toys instead of candy or other sugary treats.

Communicate with school: Let your child’s educational team know about the diet and provide a friendly letter explaining it to parents who may be supplying treats at school functions.  Supply your child’s teacher with enough safe snacks to cover any off-limits treats that may be available throughout the school year.

In helping my clients increase their self-awareness and their skills in problem solving, I’ve learned that they work best when given the following steps to work through toward the goal of asking for help. For many of you, these steps may seem like common sense. They are – if your brain is wired to work with other people. But for an Aspie child, the act of working with is a complex social process and a primary challenge. If you realize this, it will likely help you understand why the seemingly simple act of asking for help can be so challenging.

Here are the steps I’ve discovered:

1. Know you need it.
There are Aspies who lack the awareness to realize they need help. In their black and white way of thinking, they categorize things as “good or bad” and “right or wrong.” In such an absolutist way of thinking, there is little room to conceive that a solution is possible. This explains why Aspies get upset when they are unable to get things to work the way they want as a result of their efforts alone.

Not knowing how to do with, they default to doing the task alone. When they’re not successful, they conclude that it can’t be done. When they don’t achieve the desired result, they become upset by the conclusion: “if I can’t do it alone, it can’t be done.”

It is at this point that I introduce the concept that the task “can be done with help.” This first step is learned by the child when identifying the point at which he or she continues to do the same things without the desired outcome. That’s the point at which they can ask for help.

2. In what form do you need it?
Once a child has determined help is needed, the next step is to determine in what form help is required. Does he simply need information, such as a verbal answer to a question? Does she need to have something physically demonstrated? Does he need an actual hand in doing it? This is important for each child to know; otherwise, their request won’t be specific enough. Teachers are often biased toward their teaching style, whether it be auditory, visual, or tactile. Unless a child’s ideal learning style is addressed, help will likely be given in an inefficient manner. This will frustrate both the student and the teacher because understanding won’t improve after help is given.

For a student on the spectrum, knowing the way her own brain receives information best is crucial to the learning process. Help must be asked for in sensory terms in order to communicate to the helper in what form help is needed. Examples of sensory specific questions are:

- Can you tell me? (auditory)

- Can you show me? (visual)

- Can you do it with me once? (tactile)

3. Whom do you need it from?
When asking for help, it needs to be from a person who has what you need and will consistently provide help. A spectrum child will often ask everything of the person he’s most comfortable with, even when that person repeatedly demonstrates he or she doesn’t have the necessary knowledge or skills in that area. For example, a child who knows everything about WWII will ask his parent who is an accountant and knows nothing about WWII to explain the logic behind certain strategies, but when the parent doesn’t know, the child becomes angry at the parent.

The fact of the matter is, the child asked the right question of the wrong person. It is important to help the child identify the key people and resources needed to help him find the answers he seeks. I’m always leading my three Aspies toward learning to find the solutions beyond me so that they get used to working with others.

4. How to ask them for it.
In the modern age of communication, help can be asked for in a variety of ways. One could simply walk up to a person, e-mail, text a phone call, or any other manner of communication. Then, there is the style portion. I can remember a time as an adult when I walked up to someone and began asking my question. The person stepped back and said, “Well, good morning to you, too.”

This person was telling me that she required a greeting before my asking the question. After her surprise response broke my train of thought, I collected myself and gave her the greeting she wanted. She was then happy to answer my question.

It is exchanges such as these that those on the spectrum – like me – find frustrating and avoid. We want to exchange information that is concrete. In face-to-face conversations, others insist on adding “layers” to the exchange. These layers change from one person to another and can often make or break whether we get what we want.

Requirements such as pleasantries and other forms of chit chat serve a social purpose that eludes those on the spectrum, which is why they are dispensed with. In the modern era of e-mail and texting, many spectrumites won’t talk to their friends until they get home and can either e-mail or text. These forms of communication are the equivalent of the fast food drive-through, which encourages speed and brevity over social chit chat. Those on the spectrum prefer this over face-to-face exchanges because it is a better fit for their communication style.

In the event that a face-to-face exchange is unavoidable, it is necessary for those on the spectrum to think out and rehearse precisely what they are going to ask beforehand. I do this daily because it helps me make sure I convey exactly what I want, and it prevents me from becoming tongue-tied by social anxiety. Unfortunately, the fear of being corrected for imperfect use of social pleasantries is enough to deter a spectrumite from the face-to-face encounter.

5. Is it the right time?
Of course, it is possible that you may have the right question and the right person, but it isn’t the most convenient time to talk to them. The script would go something like this: “Hello, I have something I need some help with, is now a good time?” If the answer is “yes,” this represents success and you can ask for help according to step 4. If the answer is “no,” then you’d ask when would be a better time and then follow up at that time until you get the help you need.

After reading this, many individuals will realize that they go through these steps in their head in mere seconds. I’m getting better at it all the time. For the Aspies of the world, who find doing so challenging, this strategy can be surprisingly effective in helping them ask for help when they really need it.

Allan Gustafson, Interview with Jeremy Sicile-Kira, Transition Year 07-08

Like all parents, my husband and I worry about our son, Jeremy, and what his future will look like. Jeremy is now 20 years old, and with the economic situation being what it is, we are doubly concerned about the financial aspects of Jeremy’s life as an adult. But as the saying goes, worry gets you nowhere – fast. Preparing, planning. and creative thinking is a better alternative to wringing our hands.

When thinking about employment for your child or student on the spectrum, there are a few aspects that need to be focused on: the life skills he or she needs to learn; a clear understanding of what employers look for in an employee; the interests and strengths of the person on the spectrum; the usefulness of mentors; and the different employment structures currently available.

Necessary Life Skills
In my latest book, Autism Life Skills: From Communication and Safety to Self-Esteem and More – 10 Essential Abilities Every Child Needs and Deserves to Learn, the ten skill areas covered are important for all aspects of life, whether at school, at home, or in the community. Some of the skills, such as self-regulation, independence, social relationships, and self-advocacy are important for getting and keeping a job. The topic of earning a living is the last chapter in my book, because being able to get and hold a job is really a culmination of all the life skills hopefully learned during the school-age years, whether a person is on or off the spectrum. For example, for someone to be accepted in a workplace, you must be able to control your emotional and sensory meltdowns. A certain amount of independence is needed at most jobs. Understanding that you should speak to your boss differently than you would to a colleague is important to know in most work situations. Self-advocacy skills are necessary in order to request what you need to get the job done.

Life skills, in general, should be broken down and translated into IEP (Individuals with Disabilities Education Act) goals and objectives, especially during middle school, high school, and transition years. Obviously, everyone is different, and the skill level reached for each of these skills is different depending on the person, but every student needs to learn a minimum in order to live and work in the community.

What Employers Look for When Hiring
Too often, when looking for a job placement for a person on the spectrum, people take the approach of asking for handout, or a favor. We need to approach this differently. I took a look at the top 10 skills and attributes most employers look for as identified by the Bureau of Labor (Job Outlook, 2003) and discovered that many of those attributes are attributes people on the spectrum have, yet rarely do we sell those attributes to prospective employers. Here’s the top ten of what employers look for: honesty and integrity; a strong work ethic; analytical skills; computer skills; teamwork; time management and organizational skills; communication skills (oral and written); flexibility; interpersonal skills; motivation /i nitiative.

Now, many of you who are reading this are probably focusing on the skills in this list your child or student does not have. Look at it again, and think about what attributes your child does have. For example, most people on the spectrum are honest to a fault – they are usually the ones in the store saying “yes” when a woman trying on a dress says “Does this make me look fat?” They are not the employees who will be caught with their hand in the cash till. That’s a positive point to sell. A strong work ethic applies to most of our guys and gals – th e ones who do not like a change in routine and are going to be there rain or shine. They will not be calling in sick because they had one too many martinis the night before, or leave early because they have an event to attend. Analytical skills are really “obsessive attention to detail,” and many of our children have that. The child who likes to line up blocks and trains probably has good organizational skills. Teamwork and flexibility are difficult areas for many, but we should be teaching flexibility at school (there are ways of doing that), and teamwork can be handled by ensuring the person on the spectrum has one person on the team that they is in contact with for all needed information. Many of our children with Asperger’s are good communicators, and some have become journalists, speechwriters, and professors.

The point is, when people are selling a product and/ or service, they market the positive attributes, not the negatives. And that’s precisely what we need to be doing with any prospective employees on the spectrum.

The Child’s Interests and Strengths
It is extremely important to consider what your child or student likes or is passionate (i.e., obsessed) about and figure out how that can help him earn money. In most cases, people on the spectrum can be difficult to motivate – unless it involves something they are really into. For some, it is quite obvious what they are particularly interested in because they don’t let you forget. The trick is to figure out how to use that interest and turn it into a moneymaker or to find a career field that can use that particular interest or talent. That’s where mentors come into play (more about that later).

For most on the spectrum, a job will be their one connection to the community and their main activity. If a neurotypical hates his job, he usually has another aspect of his life that is bringing him pleasure – his family, his church, athletic activities. However, most on the spectrum do not have family or friends or many outside groups they belong to, so it is important to help them find work that will fulfill them in some way.

There are those for whom it is fairly obvious what they are passionate about. For many like my son, Jeremy, it is a much less obvious. There doesn’t seem to be anything he is particularly obsessed about that could lead to employment. He used to love to spin tops (physics researcher?), and to follow the patterns in carpets and floor tiles (carpet checker in a rug factory?), but now he is mostly focused on communicating about girls with his support people (beauty contest judge?). However, by having different people work with him or observe him in different environments, we have been able to come up with ideas to try out and jobs to avoid.

When thinking about Jeremy’s future money-making potential (either in a job, customized employment, or self-employment), we thought about the different strengths and weaknesses Jeremy had. The questions we asked ourselves are the same that most people should consider when helping someone on the spectrum who is considering employment. For example, we asked:

- What is Jeremy usually drawn to?

- Is there a particular subject area or skill area that Jeremy excels in?

- What, if left to his own devices, does he like to do most?

- What motivates Jeremy to do what he does?

- How successful is Jeremy at self-regulating? Does he need to work in a place with low sensory stimulation?

- What kinds of situations cause Jeremy to feel anxious?

- What do Jeremy’s organizational or multitasking skills look like?

- Does Jeremy do better in crowded environments or when there are fewer people around?

- Does Jeremy like moving around or staying in the same place?

- How many hours a week of work can Jeremy handle? Will he be ok with a 40-hour a week job, or does he need a part-time job?

- Does Jeremy like routine and the stability of doing the same thing every day, or does he like change?

Jeremy is interested in the concept of self-employment and did well in two self-employment experiences he tried in high school. He had a lot more control over his environment and what his daily tasks consisted of than he would have had in a regular employment situation. However, if he were to apply for a job, there are many questions he would need to ask a prospective employer (or someone would have to ask for him) during the interview process to ensure a good fit between himself and the job and the work environment.

The Importance of Mentors
Mentors can help figure out how to turn an interest into a job or into a means to earn money. Temple Grandin (Thinking in Pictures; Developing Talents) speaks often about the importance of mentors in helping to turn interests into marketable skills. That is what helped her become the success she is today. Temple had mentors from her science teacher at school to her aunt, from family friends to colleagues who were crucial to her success. If your child appears to have skills or a real interest in a specific area, someone who works in that field can help the child realize the application of his interests. Parents may realize their child’s talent but not know all about a certain employment area.

For example, a child may enjoy spending hours on the computer, but his parent who is a taxi driver or a school teacher or an attorney, may not know anything about the field of computers and employment possibilities. Someone who works in computers, perhaps a tech guy the family knows, can give insight into jobs available for someone with that child’s talents.

Mentors can also help a student feel valued as that person will be interested in the same topic he is and will enjoy hearing what the child has to say whereas family members may be tired of hearing about a topic they have little or no interest in.

Different Employment Structures
There are different employment structures currently available. By analyzing a person’s strengths and weaknesses, likes and dislikes, and by asking some of the questions above, a clearer idea of what could be a good match with the person on the spectrum is possible. There is full-time work, part-time work, seasonal work, year-round employment, and so on.

Other less traditional structures are becoming more popular, and this is probably in response to the realization that most adults with disabilities are unemployed. In 2002, unemployment figures for disabled adults hovered at 70% and had been for the previous 12 years (2002 Report by the President’s Commission on Excellence in Special Education). This report showed that, besides needing to do a better job of preparing our students for employment, we also had to start looking at other employment structures more conducive to individual employee needs.

One less traditional structure is customized employment, which means that the work is tailored to the individual, not the other way around. It can mean job carving, where one job is carved up into different tasks and shared by several people, giving each employee the part of the job they enjoy or excel at the most. Another type of customized employment is self-employment, which is sometimes referred to as micro-enterprise and which basically means having your own business or being self-employed. This can be a good option for those who are having a difficult time fitting into regular paid positions or when there is no position available. This option is gaining popularity in the U.S. as well as in the U.K. For some examples of self-employment initiatives by people with developmental disabilities, visit http://www.incomelinks.biz/projects.htm.

Self-Employment as an Option
Although I would encourage Jeremy to try an employment opportunity that seems like a good fit, I am not holding my breath waiting for that job to show up on the horizon. I am not convinced that that much has changed since 2002 in the job market in regards to hiring disabled people and certainly with all the neurotypicals now jobless, I don’t anticipate a huge rush of employers looking to hire my son.

I became interested in the concept of self-employment or micro-enterprise when Jeremy was not offered any work experiences during his first few years of high school, about five years ago. The workability person at the time felt that Jeremy was not ready for any of the job options she had in the community. His teacher, however, felt everyone, including Jeremy, had potential, and was open to creating a self-employment experience under workability. At that time, Jeremy could not communicate as readily as he can now, and so we had to come up with ideas based on observations that people who knew Jeremy made about his strengths and weaknesses, his likes and dislikes. Then we asked him yes or no questions.

I had heard of people with developmental disabilities having their own business. When the opportunity came, I attended a workshop on the process to see how it could work. It made sense to me for someone like Jeremy. It was clear that if workability was telling me there was not a work experience opportunity for Jeremy, I was going to have to create something for him to learn on-the-job skills.

Based on Jeremy’s strengths and likes, his teacher came up with the idea of starting a sandwich delivery service for the teachers. Adding to that was the fact that by the end of the week, the teachers were sick of the on-site lunch option, so there was a need for such a service. Jeremy’s second work experience was providing a needed product (selling flowers to peers at school where no flowers were available on campus). By actually running these businesses, Jeremy learned valuable business lessons. These lessons were complemented by the general education classes he took those semesters, such as a class on marketing and another one on economics. For his class projects, he had to write papers about how he applied those principles to his job. Here are some of the lessons he learned: the cost of doing business; the difference between a profit and a loss; how marketing, location and price affected the numbers of customers he was able to attract and keep. Jeremy also learned that if he could not do all aspects of his job, he had to pay someone else to do the parts he could not. In reality, it is these kinds of business lessons all neurotypical teens should be learning in the current economy.

That being said, self-employment is not for everyone and necessitates a business support team. The business support team can be made up of a teacher or parent, a paraprofessional, a mentor, a friend, someone who has business experience. Each person brings special knowledge to the team. The business team helps to advise in areas the person needs help with and also does parts of the business the person cannot, just as in all businesses (e.g., I pay a tech guy to take care of my website because I can’t). There are free resources, available online for those who are not experienced in starting up a business.

Looking at self-employment as an option sometimes leads to an actual job. The process of discovering a person’s strengths and weaknesses, can lead to discovering areas of traditional employment that had not been considered previously. Sometimes it leads to a job offer from a business in the local community that the person had visited to get more information about his area of interest.

Conclusion
Teaching children and teens on the spectrum needed life skills is a necessary preparation to life as a money-earning adult. Analyzing the needs of both the potential employee and employer as well as looking at the different options in employment structures is necessary to ensuring a good match. Finding a mentor can help with a successful transition to gainful employment.

This year, Jeremy is benefiting from two workability experiences while he is studying to earn his high school diploma. Twice a week he works at the local library (which he has visited on a regular basis for the last 10 years). Once a week he helps develop the business and marketing plans for the micro-enterprise experience that some of the other students are working on through workability. Jeremy has come a long way thanks to all the different team members along the way who believed in his potential. It takes a village….

If a woman has taken many drugs − prescription or over-the-counter − or works or lives in a chemically-laden environment, she might consider a detoxification or cleansing program.

Find a “green” dry cleaners (the chemical used in most dry cleaning facilities, perchlorethylene, is a known carcinogen.)

Use a stainless steel water bottle to carry and consume filtered water. Heated or not, the soft plastic bottles will release phthalates. Antimony can also be released from polyethylene terephthalate.

Safely remove mercury based amalgam fillings with a dentist associated with The American Holistic Dental Association (www.holisticdental.org) at least 6 months before becoming pregnant and not while breastfeeding.

Prior to conceiving, consult a natural health care clinician or physician well versed in treating GI disturbances as well as elevated levels of toxins and heavy metals. One option is to contact a naturopathic physician (ND) or an MD associated with the American College for Advancement in Medicine www.acamnet.org.)

Minimize consumption of large fish (for mercury levels of fish check: (www.gotmercury.org).

To build beneficial microflora, take high quality probiotics (in addition to improving levels of beneficial intestinal flora, these have been shown to decrease intestinal absorption of certain chemicals by facilitating their excretion) and consume more fermented foods. See BodyEcologyDiet.com.

Improve indoor air quality by opening the windows and creating cross ventilation.

When painting, choose low or no VOC (volatile organic compounds) paints. Select green building or remodeling products and allow adequate time for “non-green” building materials to outgas before moving back into the newly built or renovated nursery, room, or home. Reduce exposure to electromagnetic radiation by eliminating the use of microwave ovens, keeping cell phone usage to a minimum, and storing cell phones in your bag rather than in your pocket.

Do not sleep near a computer or other wireless devices.

Use natural methods for controlling household and garden pests.

Have children avoid playing on pressure-treated wood decks and swing sets (source of arsenic).

Minimize the use of fire retardant sleepwear (contains the toxic metal antimony).

Purchase organic mattresses and linens.

Remove shoes before entering the home to prevent contaminants from soil coming into the house.