Author Archives: janran85

About janran85

I an an Information & Resource Specialist at Community Autism Resources Inc. I'm Mom to 2 wonderful adults. A son with Autism who has overcome so much, and yet, still has a long way to go; And a daughter who is a ceramic sculptor.

The Things I Have Learned

By Jan Randall

My son Andrew is now 31 and I have no idea how he got this old, so fast.

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He was 20 months old when I first noticed his regression. At that time I was told not to worry he was completely normal. He was officially diagnosed just before his fourth birthday, after a yearlong search for answers as to what was wrong with him. So clearly, I’ve been doing this Autism thing for a long time. A LONG time…

Over that time there have been so very many things that I have learned from so very many people. I am grateful that all I have learned has made Andrew’s life so much better. So, I’d like to share some of these things I’ve learned with you in the hopes that maybe one of these things can make a difference for you or someone you love.

Visuals are vital!

Marty was the 2nd in a long line of Autism Specialists who came into our home to work with me and my husband Bob around Andrew’s issues of behavior, learning and language. Andrew had just turned eight when we met Marty. He and I would meet weekly and I would share with him different challenges we were having with Andrew. Marty would offer ideas and we would brainstorm ways to support him so he could function at his best. Not long after we first met,Marty suggested that we should be using visual supports for Andrew. I thanked him but said no, Andrew can say what he wants (“you want juice”, “go in pool”) and he knows our daily routine. Still, each time I would complain about a behavior, or problems with transition, or another issue we were having, Marty would say to me,“Andrew needs visual supports”. My response was always the same. No, he doesn’t need them.

Nearly a year later, during an unusually difficult period of time when Andrew was constantly jumping and screaming “NO NO NO” to any request we made, Marty once again suggested that Andrew needed visual supports. This time I admitted, that I didn’t really know what they were,  or how to use them. I told him, “you will need to show me what to do”. A week later Marty and I created Andrew’s first Visual support, a daily schedule. I used it that very day when Andrew came home from school, and the results left me shocked. Instead of a screaming fit of “NO NO NO” when I asked to put his coat and backpack away, Andrew quickly ran to do it once he saw it on his schedule. This experience taught me the vital importance of visual supports. It was also a lesson for me on being stubborn. All these years later I think that I was probably most reluctant because I knew creating and using visuals for him would be just one more thing on my very long “to do” list of work related to Andrew’s needs. Little did I know how much the visual schedule would save me in time wasted dealing with difficult behavior and both Andrew’s and my level of frustration.

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He still uses a visual schedule daily so he knows what is going on and so he can schedule  what he wants to do during the week.

Chores are important for EVERYONE!

My Mom has been a huge influence in my life, especially when it came to raising my kids. One of the things she impressed on me when my kids were just toddlers was it is never too early to teach and have them do chores. I remember asking her, just after Andrew turned three, “What can I teach him to do when he can’t even talk, when he is constantly having meltdowns?” She told me,“have him empty the wastebaskets.” And so a chore for Andrew was born. I learned quickly that he really ENJOYED learning this new routine of getting the small wastebaskets from the bathroom and bedrooms, then emptying them into the kitchen wastebasket. I also learned that having a chore to do was good for his self-esteem. Over time I learned too that there wasn’t much that he couldn’t do to help around the house, and that teaching him those skills wasn’t all that hard. I also learned that he learns by doing and that backward chaining is one of the ways he learns best. Today as an adult he has a long list of chores and housework he takes care of around the house including hanging on the clothesline, folding laundry, stripping and making beds and taking care of all of the trash and recyclables. He loves helping around the house

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Be careful of your mindset

Kevin, the first in a long line of what I call mentors, came into Andrew’s life when he was ten years old. They would cook together, play games, go sledding and do other things. One day when Kevin and Andrew came home I asked them where they had gone. Kevin told me that they had gone to a small Café over on Providence’s East Side. I was shocked! I couldn’t believe that he had taken Andrew, who was at that point loud and prone to meltdowns over minor things, to a café, where people quietly sip lattes and chat over scones. I asked him, “weren’t you worried about what Andrew might do?” Kevin told me that Andrew did really well. He was quiet sipping his cocoa and enjoying a cookie and really seemed to love going there. Although I had always said “the sky’s the limit” for Andrew, I learned from this experience that I had been unknowingly setting limits on what Andrew could do. Before that day I never would have taken Andrew in to any place where he needed to be quiet or where there was the possibility of him not doing well. Kevin opened my eyes to the fact that Andrew needed chances to experience all kinds of things, big and small.

It takes a village

Over the years I have learned that without all of the amazing people who have come into Andrew’s and our family’s life we would not be where we are today. Over a period of about 20 years I have worked closely with 5 different Autism Specialists from a wide variety of training and professional backgrounds. They brought vital knowledge and strategies that have provided us with ability to support Andrew to become the wonderful guy he is today.

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Andrew has also had well over 30 mentors in the last 20 years. While a few of them have been duds, most have been wonderful, and some have become part of our family. From the best of them I have learned that it doesn’t matter if you are trained in Autism or if you are 18 ,25, or 40 years old if you are a “natural”. By ‘natural’ I mean, if the type of person who will treat Andrew the same way they would want to be treated; not as a client, a case, or someone who needs to be fixed, but rather as a respected friend who needs support. These are the people who have made a huge difference in Andrew’s life and in mine as well.

My friends, who are fellow Autism Moms are also part of that village. They have taught me that it does not matter where your kids are on the spectrum or if there is a 10, 15, or 20 year age difference between my kid and yours, because we all have so much to learn from each other’s experiences.

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Life is too short to stress

It’s no secret that we Autism parents have a lot of stress. In fact I was part of a study in which researchers followed a group of moms of adolescents and adults with autism for eight days in a row. At the end of each day we were interviewed about our experiences. On four of the days researchers measured our hormone levels to assess our stress. The results were that “Autism Moms Have Stress Similar To Combat Soldiers”.

I’ve learned that it isn’t always the Autism that is the stress inducer, but rather the people who don’t get Andrew, the seemingly non-stop meetings, the paperwork and other assorted hoop jumping that comes with Autism. It can drive me crazy, if I let it. I have learned that it’s vital to find ways to keep the stress at bay or at the very least find ways to cope when things get overwhelming. For me, it’s making time to get out of the house and away from the day to day STUFF. A few years ago after a number of unexpected significant health issues I joined a small “guided meditation” group where the leader would talk us through relaxation, then guide us through an inner relaxing journey. I also bought some guided relaxation for my MP3 player to use at home. I’ve also found that simple things, for example taking some “me time” to go out for breakfast or dinner with a friend, getting a pedicure, or getting out for of the house with Bob for an hour or two  can make a big difference in how I am feeling.

All of us have learned things on this Autism journey, but we don’t always take the time to think about all the knowledge we’ve gained. I hope that you will make space to think about all you have learned and the difference that it has made in your son or daughter’s life and in yours.

Can You See the real Me

By Jan Randall

I was driving in the car the other day when The Who’s song, “The Real Me” came on the radio. I have loved that song since the Quadrophenia album came out when I was 15. Thankfully my son Andrew and I have similar taste in music so he didn’t mind me cranking up the volume.

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As I sang along with Andrew sitting next to me, I thought, he could be singing the refrain: “Can you see the real me, can ya, can ya? Can you see the real me, can you see?”

Andrew has been out of a traditional the Adult day program for 3 years now. He has a program from home that I designed specifically to give him a shot having the most normal life possible, at least as normal as you can get when Autism has made communicating a huge challenge and when your sensory system is easily overwhelmed. Leaving the Adult program is one of the best decisions I ever made for him, but it isn’t always easy. The biggest challenge has been to find Andrew work of any kind.

When Andrew was about 16, he started having behavior issues in the more academic classes at school, so we shifted the focus to developing “vocational skills”. His school did a terrific job with offering him a lot of different opportunities. He worked at a greenhouse, he delivered those free weekly newspapers to businesses, he did yard work and gardening, he stocked shelves and filled boxes with food at a food pantry, and he interned at Big Lots, working in the stockroom.

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We quickly discovered that Andrew loved to work and I do mean LOVED to work. Being able to be out, and active made him so happy. His behavior issues all but disappeared and his teachers were thrilled to discover all he could do, and do well.

Unfortunately when you make the leap from school to adult life the opportunities to work fizzle out… Andrew’s job coach Kim and I have spent a good part of the last 3 years looking for any opportunities for him to volunteer, intern or have an actual paying job. Recently however it looked like things would change. One of Andrew’s former mentors, Mike came to me and said he had spoken to a person in charge where he had previously worked, about having Andrew intern there. The person said he knew who Andrew was, that he liked the idea and felt that it would be a great opportunity for everyone involved. All that was needed was to talk to the owner. Mike was excited and felt pretty confident about this opportunity. Both Kim and I were thrilled.

Kim contacted the owner after the holidays, eager for a fresh start for Andrew in the New Year. However, before she could even finish asking about the possible internship she was told, No. I know him. He isn’t a good fit.” When she tried to push on explaining that she would be with him, supporting him and that the business was getting a 2 for 1 deal, she was again told, “No. he wouldn’t be a good fit.”

When Kim told me what happened I have to say I felt a pit in my stomach. I knew what “I know him…” meant. It meant: I know he stims. I’ve seen him stimming and humming when he comes in here. I have heard his voice and he talks too loud. I don’t want that in my place of business.

So, a couple of days later when I heard the song “The Real Me” it made me wonder. Will anyone see the real Andrew? Will someone put aside what they “know” long enough to look at his resume? Will someone look past the stimming to see the guy, who is a hard worker and will never miss a day of work? Will someone put aside their preconceived notions about Autism and who Andrew is, and give him a chance to show how his skills can benefit their business?

Part of me wants to be pessimistic. It’s been 3 years of looking and all we have to show for it is two very small volunteer jobs that take less than 3 hours a week. But most days I have to believe that the answer is yes. I have to believe that there are good people out there who will “see the real me” and give Andrew, and so many others like him, who desperately want to work, or volunteer, a chance to contribute to their community, and to show their knowledge, gifts and skills.

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Skills for Life: The Benefits of Teaching Your Child with ASD Chores

By: Jan Randall

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When I was growing up my brothers, sister and I all had chores that we had to do around the house, as did all of our friends. Saturday morning was prime time, but chores weren’t just limited to then. My mom was a firm believer that helping out around the house was important because these were skills we needed to learn. We also were never paid to do chores because we were taught, that being part of a family means everyone helps because that is what family members do for one another. Mom also liked to remind us that she did not get paid to make our meals or wash our laundry!

Because of this it should have come as no surprise when my Mom asked me “what chores are you teaching Andrew?” He was about three and a half at the time and although he hadn’t yet been diagnosed with Autism, he had lost his language and eye contact. He also frequently had some serious meltdowns. In Mom’s eyes that was no excuse not to start teaching him how to help around the house. Still, when she asked me about chores, I think I may have laughed, incredulous at her question. I do though distinctly remember asking her what possible chore Andrew could do when he had so many challenges.

Mom suggested the simple task of “emptying the wastebaskets” as the perfect place to start, saying it easy enough for him to learn to do. Growing up “emptying the wastebaskets meant that you collected the wastebaskets from through the house and dumped them into the big basket in the kitchen. This chore got done when it was time to take the trash outside.
I still remember teaching Andrew to do this chore; telling him “time to empty the baskets” and guiding him, hand over hand to pick up the basket, bring it to the kitchen and dump it in the big basket, then to bring it back to the room where it belonged. We only had 4 baskets, one in each of the bedrooms, the bathroom and the living room, so it really didn’t take long for Andrew to learn the routine of emptying the wastebaskets.

For a long time this and setting the table were his only real chores. As he got older, I realized that it was important for him to learn as many household tasks as I could teach him. By the time he was 6 I had taught him how to use the dust pan and brush to finish up when I swept the floor, he could also strip his bed, before I would make it up clean, and he also helped me make his bed and mine.

As Andrew got into his pre-teen years I started asking my husband Bob to teach him how to rake leaves, and shovel snow. People who know my husband know he is VERY particular when it comes to doing any jobs, and so he balked at having to teach Andrew saying it was much faster and easier to do it himself, and besides it would take Andrew forever to learn how to do it the “right way”. I sympathized, to an extent. For some things it did take a lot of time and repetition to teach Andrew how to do household tasks, others though he picked up quickly.

Twenty five years of teaching Andrew so many different chores or what school would call activities of daily living has also taught me a lot. I learned that:
Learning chores was good for Andrew cognitively, as well teaching him motor skills and providing him much needed sensory input. For example: sorting laundry by types, (heavy, delicate, towels) not just color, works on thinking skills, and using clothes pins for hanging laundry is great for fine motor. Carrying in groceries and carrying down baskets of dirty laundry provide great sensory input.

Allison, Andrew’s sister saw that she wasn’t the only one who had to contribute to helping around the house. Our kids with Autism can take up so much of our time and energy that sometimes brothers and sister can feel resentful. If she had been alone in doing chores it could have become another reason to feel that way.

Chores have also been important for Andrew’s self-esteem. He enjoys, and is proud being able to help and contribute to our family. I know he enjoys hearing thank you when he helps out.

Andrew is also a HUGE help for Bob and I as it’s less for us to do when we get home from work. It is so nice to see him put the clean dishes away, or take the recyclables out, just because he sees that it needs to be done. Recently when Andrew broke his foot and needed surgery to repair it, he was laid up for weeks. Bob and I were constantly saying that we just couldn’t believe how much extra work we had to do because Andrew couldn’t do anything while he was recovering.

Having things he can do by himself has also been a terrific way to keep him busy. When Andrew is bored he will look for things to do around the house.

Andrew has skills that, he can take into the workplace. Currently he comes into Community Autism Resources weekly to take care of all of our trash, a job none of us at the office like to do, but Andrew loves it. He also has his own small side shredding businesses, learned from shredding documents.

As an adult Andrew does just about as much work around the house as his father and I do and I am always looking for new things for him to learn like learning how to open and close the sky lights. This past winter Bob finally relented and let Andrew help with the shoveling. Even though he isn’t perfect, he WILL learn. We are also considering getting Andrew a cat for this year for his birthday. We realized that Andrew has the skills to learn how to take care of a cat on his own, including cleaning the litter-box!

andy takin gout trash

I’m grateful that all those years ago my Mom asked me that important question. Like all good Moms she gave me a push in the right direction, which has greatly benefited Andrew and our family. And as we all know, Mom knows best!

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It doesn’t matter if you are a parent, teacher, speech and language or other type of therapist or counselor. There is SO MUCH to be gained by attending this year’s ASD Symposium!!

1. Something for everyone.

The ASD Symposium is a wonderful educational opportunity for: educators, SLPs, OTs, psychologists, paraprofessionals, social workers, therapists, parents, family members, and other care givers who live with and/or support the development of people with ASD.

Speaking as a parent I can say that the knowledge that you can gain by attending the Symposium is tremendously valuable and will benefit your child, possibly for years to come. I have been SO FORTUNATE to have been able to attend every one of the last 19 ASD Symposiums. The knowledge I have gained over the years has served my son Andrew well. I have come to better understand Autism, how it affects Andrew and I have learned new ways to support him so he can function at his very best. I have also been able to share what I have learned with family members and the support staff who work daily with Andrew.

2. The history

The ASD Symposium has always been ahead of it’s time. It was “the first national forum to address the importance of understanding interests, strengths, and talents of people with Autism Spectrum Disorder.” Rather than focusing on areas of deficit, the Symposium’s speakers “put an emphasis on the importance of identifying and developing the interests, talents and the abilities of people with ASD, of all ages, and all ability levels, where they live, learn and work.”

Rather than just having professionals in the field of Autism offer their insights, The ASD symposium’s history is also full of presenters who are people with ASD and parents of people with ASD.

The parents have included: Elaine Hall, Maria Teresa Canha, Jackie Marquette, Clara Claiborne Park, Michael John Carley, and Barbara Domingue. This year we add to that list with Ron Suskind, and with Dena Gassner who will present from the perspective of a parent and as a person with ASD.

Presenters with ASD have included: Debra Lipsky, Jerry Newport, Michael John Carly, Justin Canha, Temple Grandin, Stephen Shore,and Ros Blackburn, who coached Sigourney Weaver for her role as a woman with Autism in the movie Snowcake

 3. This year’s speakers:

Every year we have outstanding speakers and this year is no different.

Emily Rubin, MS, CCC-SLP: is the director of Communication Crossroads, a private practice in Atlanta, GA. She is a speech-language pathologist specializing in Autism, Asperger’s Syndrome, and related social learning disabilities.

My experience with Emily is more personal. After Andrew had made very little progress with his language in over a 3 year period, I asked Emily to do an Independent Evaluation of Andrew who was then 15 years old. Her evaluation, along with the specific speech and language therapy protocol she developed for him, and her training the school staff in its use, resulted in significant language gains in a matter of months. Read Emily’s full bio here

Dena Gassner, LMSW: Dena, “a person with an autism spectrum condition” is also a parent to a young man on the spectrum. In addition she operates the Center for Understanding in Nashville, Tennessee. It is always so interesting and enlightening to hear speakers who are on the spectrum. I’m excited to hear what Dena will share in her presentations on helping people with ASD with “self-awareness to enhance personal wellness” and understanding “the causes, and individual triggers of dysregulation” and how understanding and accommodations can support people to function at their very best. Read Dena’s full bio here

Ron Suskind, Pulitzer Prize-winning journalist and author. Ron’s recent book Life, Animated, A Story of Sidekicks, Heroes and Autism, was inspired by his son Owen’s self-directed transformation and the unique way that the Suskinds “enabled him to engage and motivate himself via his profound affinity for Disney.” Ron will also discuss how new research studies and behavioral therapy for autism spectrum has been affected by what they learned from Owen and his “affinity” for Disney. Read more about Ron and the book Life Animated

 4. Discounted rates for parents

Autism Conferences can be expensive to attend. The price for parents and family members (as well as students) is purposely kept low to enable parents, grandparents, siblings and those with ASD to attend. The cost for 1 family member to attend both days is $199.00 and a second family member can attend for only $70.00 more. The cost for one day is $119.00 and $50 for the second person. Continential breakfast, lunch are included and parking is free.

5. The money raised supports the Parent’s Retreat

The ASD Symposium is not a for profit event. All of the money raised goes to support the Parent’s Retreat, which just celebrated it’s 20th anniversary. This very special yearly event gives parents of children and adults with ASD the chance to break away, rest, and “reflect on the journey.” For many of the dads who attend the retreat it’s their first chance to meet and talk with other guys who also have a child on the spectrum. Some couples have credited the retreat with “saving their marriage.” For other’s it’s a much needed break to rest and regroup.

 6. The Bookstore!!

Every year the ASD Symposium also includes an amazing bookstore with a wide variety of top notch books, DVDs and practical resources. Anyone who has had a chance to visit the bookstore will tell you with so many great resources it can be difficult to decide which materials to purchase. This year we have as a new addition to the book store, Fidget Kits. Each Kit will contain 11 Fidget/Sensory items and come in a Clear Vinyl Zipper Bag, for safe keeping and easy travel! In addition, laminated photos of each Fidget will be included as Visual Support for those who need them!
We will also have individual Fidget and Sensory items not included in the Kits!

7. Networking with experts, professionals and other parents and family members

One of my favorite parts of attending each ASD Symposium is the chance to talk and network with other parents. The ideas we can share with one another can be so helpful and it’s also nice to catch up and see how others are doing. Also the opportunity to meet, chat, and ask questions of people with Autism and other experts in the ASD is truly an exceptional opportunity.

8. We make it easy for you to attend.

  • Registration can be done Online or via Mail or fax.
  • You choose your lunch when you register, including vegetarian and gluten free
  • Parking is FREE

I hope this encourages you to join us for the 20th annual ASD Symposium!  I look forward to see you there

The Importance of Mentors for Tweens, Teens and Adults with Autism

By Jan Randall

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“A mentor is an individual, usually older, always more experienced, who helps and guides another individual’s development.” F. John Reh

A few years ago I was part of a group of 10 parents who were chatting during a break at an Autism event. We all had boys who ranged in age from 12 to their 20s, and all are on the more challenged end of the Autism Spectrum. As we talked our conversation turned to the behavior challenges that we were currently dealing with, or had faced in the past.

Later as I thought back to our discussion, I was struck by the fact that all of our children who were going into the community with a mentor or support person on a regular basis, doing things that teens like to do, were doing well. Conversely, the guys who were having more behavior challenges were the ones who were coming home from school and spending the afternoon and evening sitting in front of the TV, computer, or doing some other kind monotonous activity.

My realization, that kids getting out, being active and having fun with someone who cares about them didn’t really surprise me. I’ve been talking about the importance of mentors for our kids for years. My 28 year old son Andrew has steadily had a mentor in his life since the age of 11. But Andrew’s first mentor came into his life when he was only 8 years old.

We had just moved Andrew from a private Autism school to public school. Although he spent most of his day in a self-contained classroom, part of his day was spent in a typical first grade class. Shortly after the start of the school year I got a phone call from a young man named Sean. He told me his little sister was in Andrew’s first grade class. He then explained that he was a high school senior and in order to graduate he was required to do Community Service. He asked if I be interested in having him do his Community Service with Andrew.

At first I was a taken aback by the thought of my son being a community service project. My other concern was Andrew only had about 30 words and it wasn’t unusual for him to get confused or frustrated and have a meltdown. The prospect of having Andrew out with a 17 year old who had zero experience with Autism was scary, to say the least. But the more I thought about it, the more I thought that this was a terrific opportunity not only for Andrew but for me as well. Andrew could have fun with a “big brother” and I could get a much needed break for 90 minutes a week.

We started by having Sean come to our home to meet Andrew and spend time talking to me, so he could understand Andrew better. Then, over the next few weeks, Sean and Andrew played basketball in our driveway so I could support Sean as they got to know one another. After about a month it was time for them to go family swim at the Y, Andrew’s favorite activity. The first week I drove Andrew to the Y where we met Sean. I stayed to watch them in the pool and when swim was done I left and let Sean take care of Andrew and drive him the 2 miles to our home. Their relationship continued for the rest of the school year and ended when Sean graduated in early June.

Andrew’s next mentor came when he was 11. This time it was Kevin, a college student who was in his early 20s. Initially Kevin started by coming to our home to do activities with Andrew. It was the winter, so they would bake cookies or brownies. As they got to know one another they would go sledding, and out to other places in the community.. I’ll never forget the afternoon Kevin brought Andrew home and I asked him where they had gone. Kevin responded “a café”. I was shocked, a café? Seriously? I would never have imagined bringing Andrew to a café, but to Kevin it was no big deal. After walking around Providence they stopped at a quaint little café, Kevin sipping coffee and Andrew having hot chocolate and cookies. Andrew had a blast and I learned a valuable lesson about not putting limits on what Andrew might enjoy doing.

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Over the years Andrew has had over 25 mentors. The majority have been college students, and I am pleased to say that they have gone on to some wonderful careers, including: surgeon, nurse, college professor, speech & language pathologist, social worker, art therapist, and teacher to name a few. I know that their experiences with Andrew and our family have taught them so much, and that what they have learned they have been able to carry into their lives.

What they have given Andrew cannot be described in a few short sentences, so I’ll close with a quote from Tara, former teacher, mentor, and forever friend: “It is a well-deserved and WELL-EARNED title to be considered one of Andrew’s friends. I earned this title by sticking in there through thick and thin, by letting him lead me to what works with him, and by endless patience and acceptance. Once I ACCEPTED him for who he was, I not only learned how to get along with him, I learned how to love him- that made all the difference in teaching him.”

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The New Autism Rates… Many Questions, Few Answers

By Jan Randall

Last week the CDC released these numbers: 1 in 68 children in the United States has Autism. Breaking it down even further, it means that 1 in 42 boys, 1 in 189 girls and 1.2 million people under the age of 21 are affected.

I don’t know about you but I feel sick and very sad. I also have some questions, and not all of them have clear answers.

The new numbers were gathered from children who were born in 2002 and were evaluated in 2010. These are children who are now 12 years old. Why is it taking four years to get up to date information on the number of children with ASD? If the numbers are 1 in 68 for 12 year olds, what are they for children who are 8 years old, or 6 years old or younger?

With one in 68 children on the spectrum how can Autism still not be considered a national health emergency?

There are conflicting reports related to the release of this new information.

From the Associated Press article released the same day as the new numbers, this quote: “health officials say the new number may not mean autism is occurring more often”

The same evening as the AP article, on ABC’s World News Tonight Diane Sawyer interviewed Dr. Richard Besser, Pediatrician and former Acting Director of the CDC who said, “Why the surge? It could be better diagnosis, but experts do say there are more children with autism.”

Well if experts say there are more children with Autism why aren’t people asking why?

In 2012 the National Institute of Mental Health posted this on their website: “genetic and environmental factors appear to be involved” in the cause of Autism.

Where are the investigative journalists who will ask the hard questions about what the environmental factors are and how are those environmental factors related to why the numbers have risen so dramatically over the last 20 years?

 But it is not just Autism. Let’s look at two other rates:

Asthma rates in children as of 2011 are 1 in 10. The CDC says: “While we don’t know why asthma rates are rising, we do know that people can control their symptoms…”

And food allergies, also from the CDC website: “From 1997 to 2007, the prevalence of reported food allergy increased 18% among children under age 18 years” No comments as to why, so I looked to the Peanut Institute which had this to say: The science is not clear as to what causes peanut allergy. Both genetic and environmental factors appear to be involved.

Sound familiar? So why aren’t more people asking what is happening to this generation of children?

But back to Autism. I have friends on Facebook from across the US who have children, teens and adults with Autism. We spent a lot of time on Thursday discussing the new numbers. The anger and frustration at what is not being done was profound. I think my friend Cheryl from Mississippi expressed it best when she said we are “losing the next generation of fire fighters, police officers, military, truck drivers, farmers…replaced by people who need life time assistance…” Well said and scarily true.

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2 weeks ago I wrote the blog: “What does April mean to You?” and I talked about the need for April to be Autism Action Month. I’d like to ask you to read it and find a way to take action for all these children and adults who are affected by Autism today and for the generation to come. Think about this: Without legislative activity and additional funding how will the education systems be able to handle an increase in numbers if they are already struggling? How will Human Service organizations cope with numbers which grow every year?

You may also want to take a few moments to check out the following links from a variety of national Autism organizations and their take on the numbers as well as the Action Alert from the Autism Action Network, a national, non-partisan, grassroots, political action organization formed by parents. These are all well worth reading. Then please consider what you can do, because it’s only by acting together and demanding action that we’ll begin to get answers.

Action Alert from the Autism Action Network

New Autism Rates comments from Autism Research Institute

National Autism Association Autism now affects 1 in 68-children

Autism Society New prevalence rates

What does April Mean to You?

By Jan Randall

I’ve known for the last month or so that it was my turn to “blog” on a topic, so I’ve been batting around a whole lot of ideas on what I wanted to talk about. Then it hit me. April 1st is less than 2 weeks away and we all know what that means; once again it’s time for Autism Awareness Month. YAWN Sorry you will have to forgive me for not being enthusiastic.

My son is 28 and I remember when Autism Awareness was desperately needed. 20 years ago when I started working at Community Autism Resources I was shocked and surprised to meet someone who had heard of Autism.

Today, I think people are pretty darn aware. Everywhere I go I meet people who know about Autism. I’m at the supermarket and the produce manager tells me about his nephew with Autism, the girl at the register tells me about her friend’s child. At the dentist’s office I start chatting with a gentleman whose neighbor has two kids on the Autism Spectrum and his cousin has a toddler who was just diagnosed. The physical therapist I see, his wife teaches kids with Autism. Think about it, now it’s rare to meet some who doesn’t know about or have some connection to Autism.

In March 2013 the Center for Disease Control released the results of a survey of parent’s across the US. The outcome: 1 in 50 children between the ages of 6 and 17 have an Autism Spectrum Disorder diagnosis. This statistic tells me that we do not need more awareness, WE NEED ACTION!  We need the kind of Action that will make a difference in the lives of children, adults and families living with the day to day challenges of Autism Spectrum Disorder!

With April right around the corner I think we need to change the name to Autism Action Month! Think about the positive changes we can make if each of us makes some time to be Autism Active.
you can make a difference
For me, Action takes many forms but one of the most important is supporting Autism services in our own communities. For those of us in Southeastern Massachusetts it’s supporting Community Autism Resources. That may sound a bit self-serving but the importance of local services for families can’t be understated. I see and hear it every day. Parents and grandparents need someone to talk to and to answer their questions about therapies, communication, social and behavior challenges. They need information about the medical issues that are part of Autism, they need to learn how to negotiate the various systems they will encounter, they need to know where to go to find the evaluations and therapeutic services their child will need, sometimes for the rest of their lives.  Just yesterday a Mom wrote to us and said: “You are such a critical piece for all the families.  You help put the pieces together.  So Thank You.”

Action is also about taking the time to get better educated ourselves or to educate others about the best ways to support children and adults with Autism Spectrum Disorder so that they can grow, and learn and reach their full potential. It’s also getting educated on ways we can help them be as physically healthy as possible, as so many of our children have medical issues as well.

Each of us needs to be educated too about the organizations where we choose to donate our time and/or money to support the Autism cause. Not all charities are created equal. Before you donate do your homework so you can be assured that your dollars are actually helping!

Contacting your state legislators, congressmen and senators is vitally important too. The legislation issues that impact people with Autism and their families are endless and include:
•    The continually rising rates of Autism
•    The need to look at the contribution of environmental factors in the rising rates
•    The fact that tens of thousands of people with Autism across the US are aging out of school with no choice of where to go because programs that are geared for specifically for adults with Autism are virtually non-existent
•    And FUNDING for services

I hope you will join me this April in some serious Autism Action! I hope too that you will share your ideas for Action in the comments section below. Together we can bring more than awareness to our community, we can, to quote Ghandi, “Be the change that we wish to see in the world.”