Girls on the Spectrum

I came across a guest post written by Catherine Fozard, a woman who was diagnosed with ASD at 31. The experiences that she shares are frustrating yet also compelling. She encountered mis-diagnosis, mis-information, and mis-understanding for too many years. 25 years ago, a diagnosis of autism was seldom given to anyone, let alone a girl. I, too, remember when Ryan was three years old and a psychiatrist, who was reviewing his eligibility request, said: “He can’t have autism – he talks in sentences.” I was shocked that a professional in the field would believe such a statement! Fortunately, these comments (I hope) don’t occur in today’s well-informed society.

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Sesame Street deliberately chose to make their new character with autism a girl, hoping to bring greater awareness to the differences between boys and girls on the spectrum.

Still, we know that some misconceptions continue. There is a need to expand our knowledge about autism as it relates to girls. For Women’s History Month, I wrote a blog on why girls with autism are diagnosed later, and less frequently, than boys are. (You can read the full article here.) We know that ASD is about 4.5 times more common among boys (1 in 42) than among girls (1 in 189), but in fact we have little understanding of the roots of these differences.*

Part of what I found so moving in Fozard’s article was her challenge to us to help create more awareness of the struggles of girls with autism and the adversity they face every day, in the hope that we can create a better support system for them. As she says, “the world is hard enough without having to go it alone.” I was fortunate not to have to “go it alone” because of my network of family, friends, and supporters who walked with me on my journey with Ryan. And yes, the journey continues!

Read Fozard’s complete article here: https://www.autismspeaks.org/blog/2016/07/20/invisible-girls-autism-spectrum

*Source: http://www.cdc.gov/ncbddd/autism/data.html

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Transition From Summer to School Smoothly with These Tips

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I’m often asked for some tips that helped Ryan and I prepare to go back to school. Below are several of the strategies that we learned over the years. I hope they help both you and your child prepare for this momentous day and make the year a successful day!

Establish a file for the new school year.

As most of the material you’ll be receiving from school will be paper, it is helpful to create a space to organize daily notes, progress reports, report cards, IEPs, and the multitude of paperwork that you receive throughout the year. I had a file drawer that was “Ryan’s” and in it I kept separate folders for each of these types of information by school year. This is a sure way to easily access a file or report whenever needed. I recently went through these files at home in an effort to declutter. I still had notes from kindergarten!

Decide how you wish to communicate with the teacher(s).

Email, paper, phone calls, and meetings are all important and require documentation. I always met with the teacher at the beginning of the year to find out what system worked best for him or her. I found this to be extremely helpful to allow for consistency between home and school. If possible, give the teacher and your child the opportunity to get acquainted. I also found it helpful to provide a handout describing what teaching methods and behavioral strategies work the best for your child. I titled this sheet “What Works for Ryan” and listed bullets of what did and did not work for Ryan.

Establish a before and after school routine.

Waking up, getting dressed, eating breakfast, waiting for the bus… these are all things that need to occur seamlessly each morning. Similarly, there are a number of activities that need to occur each night. Bus drop off, homework, exercise, dinner, bedtime routine… you will know what activities are on your list, but by establishing a set routine you will make your life less stressful.

Introduce a new environment beforehand.

If your child is going into a new school or will have a new teacher, have a discussion or even write a social story as a way to introduce these new ideas and give your child time to process.

Take time to mentally prepare yourself as well.

The beginning of the school year can be an anxious and stressful time but it is essential for you to remain positive and calm, so that your child does not pick up on your anxiety. Perhaps the previous year was a challenging one, but by setting a positive tone for the new school year, this will help your child to approach it positively as well.

Plan a fun activity in September.

Give your child something to look forward to, particularly if they are anxious about the new school year. This can help them to stay motivated and positive.

Are there any tips for transitioning back to school that you’d like to share below? I would love to hear them!

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Adults with Autism – What’s next?

I have written a number of blogs on the challenges of living with autism as an adult, so I looked forward to seeing the PBS NewsHour special which aired last night: “Giving adults with autism the skills to build independent lives.” (Watch it here) The program focused on the First Place Transition Academy in Phoenix, AZ. This is a pilot program, serving 9 men with autism, which promotes independent living through teaching the skill sets needed to be successful. There’s also a focus on employment. Lessons include: how to ride the bus (travel training), where to find utensils in the kitchen, budgeting, how dress appropriately for work… etc. Although as the reporter said these skills may seem “mundane,” they are paramount to independent living.

These 9 men also live together, which offers them a chance to build friendships and as a result, function as a community. Watching the video, I thought, “Wow. This is truly incredible. Why aren’t there more of these initiatives across the country?” As I researched more on Transition First, I found the answer: to live in one of these apartments costs a staggering $3500 a month – and that’s just for the tuition for the training program. To rent the apartment can cost anywhere between $2900 and $3200 a month.adults.png

Sadly, I feel – as I’m sure most of you reading this will – that those figures are unreachable for most families. What wasn’t clear was does the state of Arizona provide any financial support for families? Certainly, if programs like this are to become viable and available across our nation, there needs to be increased funding available for adults living with autism. And of course, that begins with raising awareness that autism is a lifelong disability. By the year 2030, half a million individuals will turn 18 each year. Those numbers are astounding; our challenge is not only to be able to provide for them but to prepare for them.

What can each of us do to respond to this challenge? I’d be interested in your thoughts!

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Book Review: Harmony

There’s so much literature out there nowadays that I thought it may be helpful to offer reviews of books that I’ve found worthwhile. I hope you enjoy as well!

~ Maureen


 

Harmony, by Carolyn Parkhurst

There are a number of books written by moms and dads about parenting a child with autism. Some are good, some are great, and some are just so-so. I had seen Harmony on the summer reading list from the Wall Street Journal and thought, “that sounds like a book I’d enjoy reading by the pool.” One of my favorite authors, Jodi Picoult, recommended the book so I was sure it was going to be a winner.harmony

Harmony, by Carolyn Parkhurst, tells the story of a mom struggling with the challenges facing her family as they navigate life with her 11-year-old daughter, Tilly, who has Asperger’s, and her younger, neurotypical child, Iris. Unable to decrease their daughter’s behavioral outbursts, the family elects to leave their home and relocate to a camp led by a charismatic, cult-like counselor.

As the families cope with their new, strict, living arrangements, required to abandon technology and vehicles to the counselor, questions arise as to the counselor’s motive and emotional stability.

I don’t want to give away the ending, but I can tell you that this was a page-turner all the way through! Certainly an entertaining summer read with a surprising twist!

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International Day of Friendship

Just five years ago, the United Nations General Assembly declared July 30th as International Day of Friendship. Although it isn’t a widely celebrated day at the moment, it certainly has gained traction since its inception. And as we look at our current world, I certainly feel that we are in greater need than ever for a day like this!

IFDSo, what does International Day of Friendship represent? This day was instated as a reminder to civilians around the world to promote respect for all human rights, as well as foster a culture of peace and security through tolerance and understanding.

The United Nations places particular emphasis on involving young people, as future leaders, in community activities that include different cultures and promote international understanding and respect for diversity. Lastly, though it might seem obvious, the International Day of Friendship is also based on the recognition of the relevance and importance of friendship as a noble and valuable sentiment in the lives of human beings around the world.

I find UN Secretary-General Ban Ki-moon’s remarks on International Day of Friendship a poignant reminder of why this day is important:

“The International Day of Friendship was initiated by an individual who had a simple but profound vision: that the forces of animosity and hatred in our world are no match for the power of the human spirit.

I had the opportunity, earlier this year in Paraguay, to commend that pioneer, Dr. Ramón Bracho, for his conviction that just as friendship builds bridges between people, it can also inspire peace in our world.

This is of paramount importance as we confront the discrimination, malice and cruelty that drive conflicts and atrocities afflicting millions of people today. We must counter these destructive trends with a renewed commitment to finding our common humanity and fostering shared progress.

On this International Day of Friendship, let us strengthen bonds among individuals and generate greater respect and understanding in our world.”

Ban Ki-moon, UN Secretary-General

This Saturday, take a moment to express your gratitude for the friendships in your life and to spread some peace to the world around you!

 

 

Source: http://www.un.org/en/events/friendshipday/

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ADA Anniversary!

As we celebrate the 26th anniversary of the ADA on July 26th, I find this is a great time to renew our pledge to turn these words into actions! 

~ Maureen


pledge_on_170Every July, we celebrate two anniversaries of independence. One is, of course, July 4th. The second is less well known. On July 26th, 1990, President George H.W. Bush signed the historic Americans with Disabilities Act, a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public.

While the ADA has led to changes throughout society, perhaps the greatest area of impact is in the area of employment. With passage of the ADA, employers were required to give all qualified individuals equal opportunity in the workforce, regardless of any disability they may have.

Now, over 25 years later, we have seen so many wonderful achievements for individuals with disabilities. And we have seen incredible growth in the overall community’s attitude and mindset regarding people with disabilities. No longer are persons with intellectual disabilities hidden away in institutions; rather, we hear more and more success stories every day about what people with disabilities are accomplishing. It really is a joyous thing.

Across the Erie community, scores of businesses have opened their doors to hiring people with disabilities. Over the last several years, the Barber National Institute has assisted hundreds of individuals in securing employment. Currently, 25 local businesses employ adults with intellectual disabilities who have been trained through our supported employment program.

Still, we know that there is always more work that can be done. Too often, I hear of people who are considering opening their doors to offer employment opportunities, but have concerns. I want to debunk some of these more common myths about employing individuals with disabilities.

Myth: Hiring workers with disabilities increases workers compensation insurance rates.

Fact: Insurance rates are based solely on the relative hazards of the operation and the organization’s accident experience, not on whether an employer has hired workers with disabilities.

Myth: Providing accommodations for people with disabilities is expensive.

Fact: Did you know that many accommodations or special equipment are available at absolutely no cost? And for the minority of workers with disabilities who do need some sort of special equipment or accommodation, 56% of these cost less than $600. Employers should know that available tax incentives make it even easier for businesses to cover accessibility costs.

Myth: Employees with disabilities have a higher absenteeism rate than employees without disabilities.

Fact: Studies show that employees with disabilities have a lower absenteeism rate and a lower turnover rate when compared to employees without disabilities.

People with disabilities are wonderful assets to a business. They are typically prompt, work until the job is complete, are not searching for alternative employment, and are dedicated to doing a thorough job.

I can’t think about the passage of the ADA without recalling a remarkable woman who was seated in the audience.   Dr. Gertrude A. Barber was a member of President Kennedy’s commission on Mental Retardation, involved in crafting and promoting the ADA, and, of course, known for her life’s work on behalf of creating opportunity for individuals with disabilities. In recognition of her efforts, Dr. Barber was invited to the White House to see this landmark legislation passed into law.

I can recall how happy she was to see this step taken to end discrimination, and how proud she was that the Erie region was on the forefront of this battle.

Each year, approximately 50,000 individuals with disabilities turn 18. Nearly half of these individuals will have average or above average intellectual capabilities. Whether you are a business owner or an employee at a business, consider contacting the Barber National Institute to see what steps you can take to become a place of employment for adults with intellectual disabilities.

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Monthly Research Updates

Scientists and researchers are constantly uncovering more information related to autism, offering insights into the origins, possible causes and even at times potential cures. I come across dozens of articles on a weekly basis, some of which seem more important than others. I thought I would share on a monthly basis stories that caught my eye.

 ~ Maureen


researchFebrile Seizures & Epilepsy – An Expert Discusses

Febrile – or fever-induced – seizures are common in babies, and pediatricians rush to assure us that they don’t cause harm. In this article, a professional expert reviews commonly asked questions and addresses fears associated with these seizures.

Read the full article here.

https://www.autismspeaks.org/blog/2016/07/01/febrile-seizures-epilepsy-and-autism-your-questions-answered

 

Toxicologists Study How Pharmaceuticals Affect Genes

                For decades, researchers have studied how certain chemicals cause genetic mutations that can lead to diseases like cancer. Epigenetics involves more subtle interactions between environmental exposures and our genes. Certain chemicals appear to “dial up” or “dial down” gene activity without actually changing, or mutating, the gene itself.

Read the full article here.

https://www.autismspeaks.org/blog/2012/03/20/toxicologists-study-how-pharmaceuticals-affect-genes?utm_source=/blog/2012/03/20/toxicologists-study-how-pharmaceuticals-affect-genes&utm_medium=text-link&utm_content=Toxicologists%20Study%20How%20Pharmaceuticals%20Affect%20Genes%20&utm_campaign=relateditems2

 

‘Science junkie’ bets big on autism’s environmental origins

A self-described “autism science junkie,” Escher taught herself the intricacies of research as she struggled to understand how her two children came to have autism. Along the way, she came up with a provocative idea to explain how chemical exposures might have led to their autism diagnoses:  hormones Escher’s mother took during pregnancy damaged the DNA in Escher’s eggs.

Read the full article here.

https://spectrumnews.org/news/science-junkie-bets-big-on-autisms-environmental-origins/

 

Tune in next month for an update on autism research!

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