This guest post is by Sarah Jennings, from the Major Gifts department. Here she details her experience when she visited camps who were awarded Baker Camp scholarships funds in 2010.
Almost two years ago, Malcolm and Norma Baker, parents of a 39-year-old son on the spectrum and long-time contributors to the AGP research, funded by Autism Speaks, invited me to their home to discuss a project they wanted to “hand over” to develop into a national program. For ten years through the regional centers in Los Angeles, Malcolm and Norma had funded a summer camp program for children on the autism spectrum.
Their dream was to see the program expand nationally. They knew that Autism Speaks was the organization to go to for the program grow and flourish. We accepted the challenge and the Baker Summer Camp Program was born.
The summer of 2010 was the inaugural year. I had the pleasure of visiting five of the camps we funded in Southern California, from Burbank to Torrance, the West Side to Hollywood. I saw kids playing in groups, interacting with peers, involved in dress-up games, outdoor sports and picnic lunches. Kids who never rode a bicycle before were riding bikes; children afraid of water learned to go down the water slide and shrieked with joy as they ran through a water sprinkler.
From one-on-one interaction, pairing “spectrum buddies with non-spectrum buddies” to visiting a major film studio and making their own film, kids enjoyed just being kids. They learned from each other. They overcame fears. They made friends. They had fun. In other words, they fully enjoyed their camp experiences, just like other kids who are NOT on the autism spectrum.
“We always dreamed about sending our son Randy to camp,” said Norma. “But it was not to be. At the time he was little there were no camps that could handle a boy like our son. We wanted him to learn how to fit in. We wanted him to have fun. We wanted him to learn how to be social. We wanted him to have friends. Now that he is an adult we can see how he could have benefitted from such an experience. We wanted to give families who can’t afford it an opportunity to send their children to camp and have fun while they have a break and enjoy some respite.”
The Baker Summer Camp program funding “saved” more than one program I visited. One camp director told me that when he started his camp ten years ago it was 95% private pay. Now the tables have turned and it is only 5% private pay. If he had not received scholarship money for his campers he would have had to cancel his camp program. Another director introduced me to identical twins on the spectrum. Their mother said they had never had an experience like this and she was so grateful that she could send the girls to camp together. “It is the first break I have had in the summer in the nine years since they were born. I can’t thank you enough.”
Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, select Find a Local Resource and browse the Resource Guide.
Autism Speaks and Lindt Seeking Nominations for ‘Lindt Unsung Heroes of Autism’ (Stratham, N.H.)
Premium chocolate manufacturer Lindt USA announces beginning today it is seeking nominations for the Lindt Unsung Heroes of Autism program. One in 110 children and countless family members across the country are touched daily by the effects of autism. The Unsung Heroes program — part of Lindt’s partnership with Autism Speaks during the Easter season — honors ordinary individuals who are extraordinary champions for those affected by autism in their family, home and community. Read more.
Flash Mob Raises Autism Awareness (Charleston, W.Va.)
As people headed into the Capital Classic Wednesday night, they probably noticed something was a little different this year. Read more.
Autism Awareness Training for Law Enforcement Officers (Lexington, Va.)
The Department of Criminal Justice Services has scheduled specialized training for Law Enforcement Agencies, Fire/Rescue officers, Crisis Intervention Teams, and the County Magistrate’s office, for Critical Autism Training (CAT-1) in Lexington, VA. Read more.
Temple Grandin says autism makes her a better animal expert (Newsleader.com)
Temple Grandin, a top animal scientist and advocate for people with autism, gained celebrity throughout the country after a movie was made about her life. Read more.
Michigan lawmakers renew fight for autism coverage (Lansing, Mich.)
Michigan lawmakers are renewing efforts to require the offering of insurance coverage for certain autism treatments. Read more.
This guest post is by Stuart Spielman, Senior Policy Advisor & Counsel for Autism Speaks.
On January 13 and 14, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, held a public workshop on a critical part of the new healthcare reform law, the essential health benefits package. The law describes as essential the following general categories of items and services:
- Ambulatory patient services
- Emergency services
- Maternity and newborn care
- Mental health and substance use disorder services, including behavioral health treatment
- Prescription drugs
- Rehabilitative and habilitative services and devices
- Laboratory services
- Preventive and wellness services and chronic disease management
- Pediatric services, including oral and vision care
The task of the IOM, and ultimately the Secretary of Health and Human Services, whom the IOM is advising, is to develop the rules for using this list in designing health plans that will be offered beginning in 2014 through state insurance marketplaces.
For families affected by autism spectrum disorders(ASD), the fifth item on the list holds a special meaning. The words “including behavioral health treatment” do not appear by accident; on the contrary, these words are part of the law because of amendments offered by Representative Mike Doyle, co-chair of the Congressional Autism Caucus, and Senator Robert Menendez. As Senator Menendez pointed out at the time he offered his amendment.
Behavioral health treatments help to reinforce wanted behaviors and reduce unwanted behaviors, and the treatments are critical for individuals affected by autism and a variety of other disorders.
They can help a child to communicate and care for themselves; they can help that child from — stop him from hitting himself and those around him; they can enable a child to attend regular education classes, rather than special education classes; they can enable a child to live at home, rather than an institution.
Representative Doyle and Senator Menendez (joined by Senator Richard Durban and Senator Robert Casey) have separately written the IOM, urging that the behavioral health needs of people with autism spectrum disorders be addressed and that applied behavior analysis be included in all health plans. The IOM and the Secretary should accept this counsel.
On January 18, the Interagency Autism Coordinating Committee (IACC) considered health care reform and insurance coverage issues as part of its meeting agenda. These issues are likely to be further considered at the next full meeting of the committee on April 11. The focus on health care reform at the IOM and the IACC present a critical opportunity to correct a decades-long pattern of discrimination against people with ASD.
This “In Their Own Words” post by Katelyn Jolley, whose brother Jon has autism. Katelyn is a homeschool graduate, musician, guitar teacher, and sister to a brother with autism. She is also the founder of the Facebook group Siblings of Autistic Kids.
“Ay-yoo,” Jon said. His head was buried in my shoulder; I could hear the muffled sound of his helpless hiccuping. In that moment, I felt my frustration dwindle and disappear as it was replaced by something else: tears. Silent, warm tears to match my brother’s. We cried together.
It had been another breakdown. I hadn’t let him play outside, and he didn’t like that. During these severe tantrums, I had learned, it was nearly impossible to comfort him; I had waited for the storm to blow over.
As I knelt there comforting my sobbing brother, I found myself reflecting on the past two years of our lives.
The very first time I saw my brother, Jon, he was nineteen months old. It was a chilly February weekday. As a family, we had made the decision to adopt him. I remember giving Jon a hug for the first time; he just stood there, stiff. “He’ll get used to you,” my parents encouraged.
Not long after Jon’s adoption, we started noticing unusual traits: head banging, toe walking, screaming, and lack of responsiveness, to name a few. In the beginning, we simply equated these things with personality quirks. But there was another mystery: Jon didn’t get hurt. He didn’t feel pain; at least, he didn’t show it outwardly. We thought for awhile that he was simply “tough.” He was a husky kid, after all. Maybe he had some early-onset phobia of emotional showcases. Who knew?
We soon realized, however, that something more was going on. We took him to an Occupational Therapist, who diagnosed him with Sensory Processing Disorder (SPD). But even then, armed with a fresh diagnosis, we had a feeling that wasn’t the full story.
Jon’s tantrums continued to worsen. His second birthday came and went, and his communication skills were next to nada. His younger brother began to catch up to him in developmental milestones. With time passing and Jon not progressing, we decided to get a second opinion. We now know that Jon (three and a half) has Autism Spectrum Disorder (ASD).
As anyone in my shoes will agree, being a sibling of an autistic kid is not always easy. For siblings of kids with special needs, denial is often present. But I have learned that love, unconditional love, is amazing at filling in the gaps caused by frustration and confusion. I’ve found truth in the sentiment, “(S)He who laughs, lasts.” I’ve learned that acceptance is a mindset. Having an autistic sibling can be a beautiful journey. It is a remarkably life changing, character building experience – if you let it be. Along my journey as a sibling of an autistic kid, I’ve learned things I never knew, felt things I’ve never felt, and loved in ways I never knew I could.
If life hands you a lemon, don’t just make lemonade; make the best lemonade on earth and give everyone a straw.
As I knelt there holding my priceless, beautiful brother, the memories kept coming and I felt a sense of overwhelming love. I wanted to help him; I wanted to keep him safe.
“Ay-yoo,” Jon said again, and tears filled my eyes, for I knew something: “Ay-yoo” was his own imperfect, wonderful way of saying, “I love you too.”
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to email@example.com. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.
Program lets autistic teens attend school locally (Escondido, Calif.)
A year ago, Maribel Chavez had to put her severely autistic teenage son on a bus every morning to reach his specialized school some 30 miles away in San Diego. Read more.
Newly approved Newark charter marks N.J.’s first school for students with autism (Newark, N.J.)
The approval of Newark’s Forest Hill Charter School by the New Jersey Department of Education earlier this week makes it one of 23 new charter schools and the state’s first devoted to students with autism or pervasive developmental delays. Read more.
New autism sports scheme launched in Southampton (UK)
A pioneering project aimed at getting young people with autism involved in sport has been launched in Southampton. Read more.
A girl’s best friend (Canada)
Emily Buchholz and her dog Rocky are a pair that’s hard to break up. That’s because Rocky, as her service dog, is with her at all times, especially in her Grade 3 class at Bayridge Public School. So much so that the three-year-old golden retriever has his own desk and his picture is on the wall with all of the other students in her class. Read more.
Pool fun builds endurance, self-confidence for ‘group of four’ (Newbury Park, Calif.)
Joe Stewart had a grin on his face as he watched his friends swimming laps. The 42-year-old man with autism goes to ARC Skyway, an adult day care facility in Camarillo. Read more.
Autism Awareness Night at Starr Rink (Hamilton, N.Y.)
The Colgate women’s hockey team will hold an Autism Awareness Night on Friday, Jan. 28 when it faces Rensselaer in an ECAC match-up in Hamilton. Read more.
This guest post is by Geri Dawson, Ph.D., CSO, Autism Speaks.
The task of this week’s meeting of the Interagency Autism Coordinating Committee (IACC) in Rockville, Md. was to approve an update to the IACC’s Strategic Plan for Autism Research. Most of the updated sections had been approved at earlier meetings, but the committee still had to grapple with the introduction, which contained several sticky phrases. The committee is a diverse group of people ranging from a parent who believes that autism is the result of injury caused by toxins in our environment to an adult on the spectrum who views autism as a natural part of our human diversity. Given the wide range of perspectives, words matter a lot.
For example, the committee all agreed that the plan should convey a sense of urgency. Autism represents a serious public health crisis and immediate action is required. So far so good. But how should the plan convey that sense of urgency? As the discussion began, a lively debate ensued about a proposed revision to the plan’s opening paragraph, which was adapted from the Autism Speaks’ website:
Today, autism is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined, and the increasing numbers of children being diagnosed with autism has created a national health emergency. In a September 30, 2009 speech at the National Institutes of Health, President Obama specifically cited autism, along with cancer and heart disease, as one of three health conditions targeted for major scientific research investment through the American Recovery and Reinvestment Act. The President expressed his hope that research into genetic and environmental factors would result in strides in early intervention, treatments and therapies to help people affected by autism achieve their fullest potential (hot button words bolded).
The words that some members were concerned about were “childhood cancer, juvenile diabetes and pediatric AIDS.” They objected to the notion of comparing autism to diseases such as these and felt such a comparison was disrespectful to people with autism. After all, autism is not a terminal disease like cancer, one person pointed out. Others noted that the comparison was meant only to convey the scale of the problem, not to imply that autism was a terminal disease. They said that the comparison was meant to convey the huge number of people who are affected by autism. The discussion continued until Tom Insel finally pointed out that the committee had spent 30 minutes discussing the first sentence of the plan, and we still had a lot of work to do. A vote was then taken and the revision was adopted.
Similar issues were raised about the following passage, which was part of last year’s document:
The cost of ASD to affected people, families, and society is enormous. A great majority of adults with ASD struggle with ongoing and mostly unmet needs for employment, housing, services, and supports. Compounding these stressors, families with a child with autism typically lose income, possibly as a result of one parent leaving the workforce in order to care for and meet the special health and educational needs of the child. The cost to society of ASD is currently estimated to be $35-$90 billion annually, the higher estimate being comparable to Alzheimer’s disease (hot button words bolded).
Again, some committee members asked whether we should we compare ASD to Alzheimer’s disease and asked what kind of message we send to people with autism when we characterize autism as a “burden to society?” This passage could be alienating to parts of the autism community, it was pointed out. Other committee members argued that people should be made aware that families do carry a substantial burden, both financially and emotionally, especially when these families don’t have adequate services and interventions. They noted that it is important to know how much autism costs society, as this helps justify the need to increase our investment in developing better interventions. By a slimmer margin, a committee vote kept this passage in.
Less controversial but still garnering substantial discussion was the proposal to add a cross-cutting theme on the ethical, legal and social implications of autism research. The proposed language was:
As more progress is made in the autism research arena, new ethical, legal and social implications of ASD research will need to be considered and taken into account by researchers and consumers of research findings. In particular, genetic research poses unique ethical risks that require consideration both within research projects focused on other questions and in efforts dedicated specifically to exploring these ethical challenges and the appropriate responses to them. As such efforts are undertaken, it is critically important to include the autistic adult community, family members of individuals on the autism spectrum and other stakeholder groups within the discussion (hot button words bolded).
The committee was in unanimous agreement that studying the ethical issues associated with autism research is very important. At an earlier IACC meeting, I had proposed adding a research objective to this effect. The committee decided, however, that virtually all research on autism poses ethical risks and benefits, whether that research is on genetics, early screening or interventions. Furthermore, it was decided that, whenever possible, all people with autism, not just adults, should be part of the discussion about the potential risks and benefits of research.
Finally, the committee struggled with whether to add another new cross-cutting theme, one focused on self-determination. Self-determination refers to the ability to consider options and make appropriate choices regarding where to live, work, and spend one’s leisure time. Although in theory and spirit most people on the committee agreed with this concept, some expressed the concern that it was unrealistic to expect a severely impaired person with autism to live a self-determined life. “Could we perhaps substitute the phrase ‘supported self-determination,’” one committee member asked. When consensus wasn’t easily reached, the committee entertained deferring the decision until they had more time to deliberate and understand the implications of adding such language to the strategic plan. Finally, however, a vote was taken and the proposal to include the cross-cutting theme of self-determination was adopted by a slim margin.
Unlike some other committee members, I felt confident that adding a cross-cutting theme on self-determination would strengthen the strategic plan and argued strongly for its inclusion. As a clinician who has worked for years with people with autism of all ages, including those who are severely affected, I have witnessed the power and success of empowering all people with ASD with self-determination. This begins early on with teaching young children with ASD how they can effectively express their needs, wants and preferences. By doing so, such a child will have stronger self-esteem and be happier, more motivated to learn, and more likely to succeed. A study of two types of applied behavior analysis, one in which the goal and reward was chosen by the therapist and another in which they were chosen by the child with ASD, found that allowing children to make choices and work with preferred materials resulted in more highly motivated children and faster learning rates. Similarly, I have worked with severely affected nonverbal adults whose only option for expressing their dissatisfaction with their lives was to become aggressive or noncompliant. Offering these adults appropriate choices and control over how they wanted to spend their work and leisure time allowed them to live happier, more productive lives with little need for disruptive behavior.
There is often the misperception that self-determination means that a person is entirely autonomous or independent. All of us are dependent on others, and none of us is entirely autonomous. However, expressing one’s preferences, making choices, and having a sense of control over one’s life is not only a human right, it is an inherent part of being a healthy, happy human being.
I left the meeting feeling that the IACC has come a long way. Although there was disagreement among its members and people felt passionately about their positions, people treated each other with respect. Unlike the stalemate we are witnessing in our federal government with parties strongly entrenched and unwilling to “reach across the aisle,” committee members were more flexible with different subgroups of people coalesced around different positions. It was clear that, although we each come from a different perspective, we are all working toward a common cause: improving the lives of people with autism and their families. Working together, rather than against, each other can only accelerate our efforts toward this common goal.
This is a guest post by John Ferguson, partner at Goodwin Procter LLP in New York City and the parent of a child diagnosed with PDD-NOS. Goodwin Procter LLP is an international law firm with over 850 attorneys and 10 offices on the east and west coasts of the United States and in London and Hong Kong.
As parents of a first-grader diagnosed with PDD-NOS, my wife and I have experienced first-hand how critical the resource of knowledge can be in navigating the “system.”
When John LeClaire, a partner in our Boston office whose nephew has autism, approached me with the idea of collaborating on a legal project with Autism Speaks, I was eager to get involved. My wife (who is also an attorney) is a member of Autism Speaks’ 2010 ING New York City Marathon Team and we’d been active volunteers for a few years. This seemed like a great way to leverage our professional expertise to help other families living with autism.
John LeClaire and I learned that Autism Speaks receives calls and emails daily from families who are dealing with challenging legal issues and do not know where to turn for guidance. What we decided to do was to mobilize a team of lawyers at Goodwin Procter LLP to research frequently asked legal questions and develop an online resource of information and contacts for families. We saw this project as an opportunity to share some of our firm’s unique skills and resources in the hope that it helps others in finding answers and support that they may otherwise have missed.
It turned out to be the perfect pro bono project for me to be involved with, as over the years I frequently marveled at the potential for missteps and missed opportunities that comes without the knowledge to understand how to access available support and resources. A group of seven lawyers from Goodwin devoted close to five months working with Autism Speaks’ family services team to prepare the legal information resource kit that will now be available free of charge for download on Autism Speaks’ website.
John LeClaire and I are both very pleased with the results. For John, “this was an exciting opportunity to bring the resources of Goodwin to help with an issue that is close to my and my family’s hearts, and, sadly, of growing consequence and importance to our society.” We hope that the legal resource our firm developed will be helpful to you as you strive to do the best for your children and encourage you to spread the word so that as many families can benefit as possible.
To read more about the information prepared by Goodwin Procter LLP, please visit: www.autismspeaks.org/rights
Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, selectFind a Local Resource and browse the Resource Guide.