milestones autism resources
Often we are inclined to hiding the most honest parts of ourselves – but author, animal science professor & autism advocate Temple Grandin is refreshingly unrestrained with sharing hers.
It’s what the 69-year-old scientist, TIME 100 Most Influential People and TED Global Speaker has been doing for more than 40 years. As a high-functioning person with autism, Grandin, who will kick-off our 15th Annual Autism Conference at Playhouse Square on June 14 with A Special Evening with Temple Grandin, has been able to articulate her extraordinary life experiences with exceptional insight.
As someone who “lives in both worlds” – the autistic and the neurotypical – she has spent almost her entire life raising awareness and promoting acceptance of individuals on the autism spectrum. Thanks to Grandin’s efforts, we are breaking down barriers to embrace, and celebrate, neurodiversity.
“Different kinds of minds are good at different kinds of things,” she said during a recent phone interview from Florida, where she was invited to speak to top corporate executives. “That’s why we need all kinds of minds working together to solve problems.”
Grandin is known for taking strong positions on autism and the education of children with autism. She advocates for early intervention, including the training of teachers to direct specific fixations of the child. What’s new on the autism front and what Grandin is currently advocating is helping children transition into adulthood.
“We’ve made much progress in the early intervention part, but now I want to see kids go out and be successful as adults,” she says. “We need to get young people interested in hands-on skills. I’m very concerned about how the schools have taken out these hands-on classes – like home economics and wood shop, auto shop, art and theater and music.”
Kids need job skills training before they go out into the world, Grandin says. Give them a trade so they can enter the workforce and get a job that won’t be replaced by artificial intelligence.
“They are not learning how to work; they need to start as early as middle school,” she recommends. “Volunteer at their church, work in a clothing store or an ice cream shop. Expose them to something they might find an interest in. My goal for young people: get two real summer jobs before graduation.”
Another issue of great concern, says Grandin, is too much screen time.
“Kids today are totally addicted to video games,” she says. “We need to wean them off slowly. And then give them choices. I see too many smart kids getting addicted to video games. They need to get outside. Start working. Get them involved in things. Get them out with other kids.”
Sometimes, part of the problem can lie with parents, she says.
“There are certain parents who are afraid to let go,” Grandin says. “There’s a tendency to do too much for their children. But kids need to be stretched. Not thrown into the deep end of the pool, but stretched and given choices. My mother was always pushing me to do different things. When I was 13 I started working for a seamstress. At 15, I was cleaning horse stalls.”
Born on August 29, 1947 in Boston, Massachusetts, Temple Grandin was diagnosed with autism (considered a form of brain damage at the time) at age 2. Grandin’s mother, Eustacia Cutler (the actress, singer and granddaughter of the co-inventor for the autopilot aviation system, John Coleman Purves), worked tirelessly to find the best care and instruction for her daughter. Having the financial means to hire the world’s leading specialists, Eustacia held on to the hope of finding an alternative to institutionalization.
“I can remember the frustration of not being able to talk – I couldn’t get my words out,” Grandin has said about her early childhood. “My speech came in gradually. Words at a time. When I was a little kid I was very autistic. Non-verbal. Screaming. Rocking. That’s the kind of kid they just put away in an institution.”
Grandin’s treatments included extensive speech therapy and an emphasis on turn taking and playing games, which helped to draw out and reinforce her communicative abilities. As a result, she began to speak at the age of 4. “I had good mentors like my mother and my science teacher,” she says. “I’m fortunate to have had supportive mentors from elementary school and onward. It’s why I can’t emphasize enough the importance of young children getting early intervention.”
High school, on the other hand, was a whole other story. “Absolute worst part of my life,” she says. Social interactions remained difficult during adolescence. Peers regularly teased Grandin for her verbal tics like repetitive speech. Having had enough, she once threw a book at a fellow classmate who taunted her, resulting in Grandin’s expulsion from school.
Despite these challenges, she was able to make considerable accomplishments in academia. Grandin received her bachelor’s degree in psychology from Franklin Pierce College in New Hampshire, a master’s degree in animal science from Arizona State University and went on to earn a PhD in animal science from the University of Illinois at Urbana-Champaign. Today, she serves as Professor of Animal Science at Colorado State University.
“People ask me, ‘How did you end up working in the cattle industry?'” she says. “It’s because I was exposed to it as a teenager. When I was 15, I was cleaning horse stalls every single day. I was proud of the fact that I ran a horse barn.”
That exposure to horses eventually unlocked a lifelong passion for animals. For more than four decades, Grandin has dedicated her life to animal science and animal welfare. In fact, her extensive research is credited with transforming the beef industry. Over half the cattle in North America are handled in humane livestock systems Grandin created, including the development of a center track conveyor restrainer system for holding cattle. Globally, Grandin’s designs are used by the largest beef producers and processors. She is also the author or co-author of more than 60 peer reviewed scientific papers on a variety of other animal behavior subjects.
In addition to her contributions to animal science, Grandin was one of the first individuals on the spectrum to publicly share insights from her personal experience. She became well-known beyond the autistic community following an appearance in Oliver Sacks’ 1995 book, An Anthropologist on Mars, the title of which is derived from Grandin’s description of how she feels in social settings (including hypersensitivity to noise and an extreme sensitivity to detail and environmental change).
“Read Thinking in Pictures if you want to understand my mind,” Grandin says, referring to her critically-acclaimed 1995 book which explains how autism shapes her daily life. “Everything in my mind works like Google – set for the image function.”
Grandin details three types of minds in her book, The Autistic Brain.
“The Pattern Thinker would be a mathematician, for example,” she says. “The Word Thinker might be the kid who likes history. And then you’ve got Visual Thinkers, like me.”
She credits her visual search engine-type of mind with helping her understand animals and design livestock systems. She compares her memory to full-length movies that play in her head, which she has the ability to replay at will, allowing her to notice small details. Grandin argues that her contributions to the field of animal science would not have been possible without the insights attributed to her autism.
“I get most excited when things that I do work,” Grandin says of her contributions. “Like when a mother of an autistic child tells me her child went to college because of me, or when I see that a meat packing plant has really improved. Or a rancher tells me that one of my systems works really well. When I’m making real change in the real world, that makes me happy.”
[Opening photos: Rosalie Winard]
Grace Blatt, Milestones 2017 honoree of the Trailblazer Award, knows from personal experience that music can be both therapeutic and stimulating for persons on the autism spectrum. Her mission is to touch the lives of others who experience challenges due to anxiety or misunderstanding, and through music therapy help them find expression for their thoughts and feelings.
Grace is currently a student at Lakeland Community College with the goal of earning a degree in Music Therapy from Cleveland State University. For the past year Grace has been employed by the Cuyahoga County Board of Developmental Disabilities as a Good Life Ambassador. In this position she enjoys paving the way – advocating for persons with autism and other special needs.
How do you feel your efforts have impacted the autism and special needs community?
One of the most exciting ways I believe my efforts have impacted the autism and special needs community is through my work as a Good Life Ambassador for the Cuyahoga County Board of Developmental Disabilities. In this role I get to advocate for all of us in this special community by making presentations to county boards, local community collaboratives, schools, legislators, families, provider agencies, etc. I educate them about the tremendous value persons with all types of special needs bring to the greater community environments, and I provide ideas for them to embrace us with inclusion.
How has helping others shaped your life?
As a person on the autism spectrum I have experienced many challenges in trying to fit into “typical” society. By helping others, I have been able to use my experiences, both happy and difficult, to encourage and educate others. Helping others who are on this same journey is giving me a growing passion for advocating for those who cannot advocate for themselves.
What is your message to inspire others to serve the autism and special needs community?
The statement that we are more alike than different is not just a trite saying. When you meet a person with autism or other special needs, be intentional about not noticing their differences. Instead, look closely for the person inside who is simply packaged more uniquely than most others. Once you see and value that person within, you will become excited to learn more about them and how you might be able to serve such special people!
Q: As a parent, I want to help my child to have a healthy understanding of his sexuality. What is the best way to approach the subject during early childhood and later during the teenage years?
A: Most parents are concerned about teaching sex education to their child, but find resources are lacking to help them do it. First, it is never too young to start addressing sexuality. Schools don’t start teaching sex education until 5th grade, but it is recommended to start age appropriate education earlier, especially for individuals with Autism Spectrum Disorder (ASD). First, educate your child about gender differences early on (e.g., toddler and school age) through use of pictures, Social Stories™ and game playing. Remember to use different types of body sizes, hair style and clothing for both males and females. Use life-size posters, anatomically correct dolls and other hands-on visuals while teaching. Teach the similarities and differences between genders, while still encouraging non-gender stereotyped play and activities.
Next, teach about body parts using anatomically correct words such as penis, vagina, breasts, pubic hair and so forth as it is developmentally appropriate. They also need education on body fluids such as tears, mucus, saliva, sweat, blood, urine, semen and menstrual blood – explaining what body parts excrete what fluids. Again, use of pictures, Social Stories™ and other hands-on learning tools that are age appropriate will be the most helpful.
When teaching about puberty, it is extremely important to use pictures of males and females that represent body change and growth (e.g., muscle, hair, vagina, penis, etc.) throughout the lifespan (e.g., at ages 8, 12, 15 and 18). Have the child recognize what age they are in the pictures during those discussions. Many individuals report still feeling socially like an eight-year-old, even though they are in the body of a 12 or 15-year-old. Recognize that those feelings are normal for individuals with ASD.
Once the basics are taught, then you can start to teach about sexual intimacy. Sexual intimacy is very different for an individual with ASD as they typically experience a gap between “knowledge” and “experience” given their difficulties with social interactions. As they continue to grow, I’d recommend using sex education and sexual intimacy books to help with your discussions. One of my favorite resources is Davida Hartman’s book, Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders which was created for professionals but can be extremely useful to parents who are proactive in teaching.
It is also important to address challenging topics (e.g., masturbation, stalking behaviors, sexting, child pornography, indecent exposure, etc.) throughout their preteen and teenage years. Many times, these topics are being addressed after the problem has already occurred, which is why we are seeing an increase in inappropriate sexual behaviors in our schools and in the juvenile detention centers. Many of these problems can be prevented by teaching your preteen or teenager about these topics with pictures, Social Stories™ and books before the behavior occurs.
-Cara Daily, PhD, BCBA
Dr. Cara Marker Daily is a licensed pediatric psychologist and board certified behavior analyst with over 20 years of clinical, research and teaching experience with autism in the home, school, hospital and community settings. Dr. Daily is the President and Training Director of Daily Behavioral Health and the Founder and Executive Director of the Building Behaviors Autism Center.
[Opening photo: http://bit.ly/2pPJrN0]
Q: What is a STABLE Account and how do I know if I’m eligible? How can I use the money in my STABLE Account?
A: STABLE stands for State Treasury ABLE. It is an account for individuals with disabilities that is generally not counted as a resource when determining Medicaid or Supplemental Security Income (SSI) eligibility. Although STABLE is the name for the Ohio program established after the federal Achieving a Better Life Experience (ABLE) Act was passed, it is not limited to Ohio residents. A STABLE Account is not a trust. To open a STABLE Account, a person must qualify as an “eligible individual,” which means that the person developed his or her disability prior to the age of 26. Additionally, an eligible individual must be entitled to SSI or Social Security Disability Insurance (SSDI), have a condition listed on the Social Security Administration’s List of Compassionate Allowances, or be able to “self-certify” the disability and diagnosis. STABLE’s enrollment is only available online and offers an eligibility quiz to help individuals identify if he or she is eligible to enroll.
A STABLE Account can receive combined deposits of up to $14,000 per year from any source, including the eligible individual. The maximum amount that can be contributed over the eligible individual’s lifetime is equal to the sponsoring state’s 529 plan, which in Ohio is $426,000; however, the Account balance over $100,000 will be considered a resource if the eligible individual is also an SSI recipient.
The eligible individual has direct access to the funds in the STABLE Account and can even request a reloadable prepaid debit card. It is the responsibility of the eligible individual to use the funds correctly. STABLE Accounts should only be used for qualified disability expenses, which are expenses incurred when the person was an eligible individual, the expense relates to the disability, and the expense helps the eligible individual maintain or improve his or her health, independence, or quality of life. Examples include housing, transportation, education, assistive technology, employment training, legal fees, personal support services, health and wellness, and financial management. If an eligible individual expends funds from the STABLE Account for non-qualified disability expenses, the eligible individual will pay income tax, plus a 10% penalty, on the earnings of the non-qualified distribution. An improper distribution from a STABLE Account could also be counted as income when determining the individual’s eligibility for means-tested government benefits, like Medicaid or SSI, so understanding the rules and keeping accurate records is important.
For more information or to establish a STABLE Account, visit www.stableaccount.com or call 800-439-1653.
-Amanda M. Buzo, Esq.
Amanda M. Buzo, Esq., is the Executive Director of Community Fund Management Foundation, a non-profit special needs trust advisor. Prior to joining CFMF, Amanda was a special needs and estate planning attorney.
[Opening photo: stableaccount.com]
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I want to start out the story by focusing on present day. A flash forward of sorts.
We are the lucky parents of a wonderful 12-year-old girl. She enjoys her adapted dance class, ice skating, playing with her IPad, eating sushi and dressing up. We are in a good place in that we can communicate with each other, express our frustrations verbally and actually play together in ways I did not always think possible.
Knowing these things about my girl Cora is a big deal.
Looking back a few years, when Cora was 2 1/2, my husband and I faced our denial that something was not right. The typical baby and toddler books were not working. Our daughter was not “The Happiest Baby on the Block” and techniques from the Super Nanny reruns were failing miserably.
Eventually we found ourselves at a doctor’s office receiving an autism diagnosis. As freaked out as I was with the diagnosis, at least we now knew and could get a plan together to deal with it. I was eager to hear what the next steps were. I was looking for the doctor to give us a “treatment plan” like I had received from every other doctor visit up to this point. For example, “Take two aspirins and call me in the morning” or “Eat right and exercise.”
Unfortunately, that straightforward medical advice I was looking for did not happen. But we did get a web address to an organization called Milestones Autism Resources.
After coming to terms with the diagnosis and what it meant for us as a family, we found ourselves at the Milestones website. Keep in mind, the World Wide Web has many sites about autism, but for us, milestones.org was a bridge to help get our daughter to where we are today.
For example, we found local resources, references to services and most importantly a notice about a parent training series. This series became the foundation of that plan that we were longing for. It was at that Milestones training where we connected with other parents and realized we were not alone. We were presented with techniques that we could practice and use to reach Cora. We were shown how to motivate her, how to break down play tasks to small steps to build success and eventually implement techniques to help her expand her language and social skills. Most importantly, with Milestones, we were provided a safe place to ask questions and knowledgeable people to help answer them.
Over the next few years, through doctor appointments, therapy social groups, token boards, PEC charts, etc. — we are where we are today. And through my daughter’s hard work and support from Milestones, we can tell you that although it was not a journey that we asked for, it is a journey we were able to navigate because of the accessible and affordable resources and training from Milestones.
Even now, when I start to stress about what my daughter’s transition to adulthood will look like, I know we will not be on this road on our own. I know I can reach out to the phenomenal team at Milestones and ask them for guidance and support.
[Opening photo: multipleXposure photography]