Author Archives: katedansereau

World Autism Awareness Day at The United Nations

World Autism Awareness Day

March 31, 201704-02-wautismday

United Nations

“All human beings are born free and equal in dignity and rights.”  – Article 1 Universal Declaration of Human Rights

This year, I was honored to attend World Autism Awareness Day at the United Nations in New York City.  The theme for the day was “Toward Autonomy and Self-Determination”. The topics ranged from Supported VS. Substitute Decision-Making, The Road to Independent Living, Navigating Relationships, Vocational Training and Employment and The Way Forward: 2030 Agenda and the Commitment to Leave No One Behind. Each panel included speakers from around the world including Ethiopia, Nigeria, Argentina and Poland.  It was fascinating, inspiring and heartbreaking all at the same time to hear about progress and challenges facing individuals with Autism around the world.

The person who resonated the most with me that day was the keynote speaker, Professor Simon Baron-Cohen, Director of the Autism Research Centre, University of Cambridge, U.K. Professor Baron-Cohen spoke specifically about Human Rights and where individuals with Autism stand regarding the Universal Declaration of Human Rights which sets out the basic rights and fundamental freedoms that are inherent to all human beings.  There are 30 Articles within the Universal Declaration of Human Rights and Professor Baron-Cohen chose 6 to focus on and examine in terms of people with Autism. Here is what he had to share…

Article 1.

All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.

Many individuals with Autism are victims of abuse, neglect, manipulation or coercion. Often, these crimes are committed by someone close to, or trusted by the person with Autism.  Due to the social naivety, many individuals with Autism will take what any person says at face value which can result in crime against that person.  Many individuals will stay at home for fear of some type of abuse.

Article 26.

Everyone has the right to education.

Up to 20% of students with Autism are excluded from school for one reason or another.  In addition, many of students who do attend school are bullied which can lead to feelings of rejection, fear and insecurity. This can lead to students dropping out of school or underperforming on exams or work despite capability and intelligence.

Article 21.

Everyone has the right to equal access to public service in his country.

1 in 3 individuals with Autism experiences mental health challenges due to lack of support.  This lack of support in some cases can lead to depression, feelings of exclusion and even suicide.  Many individuals struggle undiagnosed and therefore unsupported.  Most countries do not screen for Autism in the preschool years or even through childhood.  People living in low-income areas may live with no diagnosis for a number of reasons and even those who do get a diagnosis may not receive any follow-up support.  Waiting time for a diagnosis can be up to a year in many areas.  This wait time would be unacceptable for other diagnoses.

Article 23.

Everyone has the right to work.

Only 15% of adults with Autism are in full time employment, despite many having good intelligence and talents.  Employment leads to a feeling of value within your community. Unemployment is another risk factor for depression.  For many, employment discrimination begins at the interview stage where the expectations for eye contact and communication are the very indications of an Autism diagnosis.

Article 24.

Everyone has the right to rest and leisure.

There are many situations where people with Autism have been asked to leave a public area like a store or a movie due to their behavior. This would not be tolerated with other diagnoses. ½ of adults with Autism report they feel lonely, 1/3 rarely leave their house and 2/3 report feeling depressed.  1 in 4 adults report that they have no friends.

Article 7.

All are equal before the law and are entitled without any discrimination to equal protection of the law.

1 in 5 people with Autism are stopped and questioned by police officers due to unexpected or non-traditional behavior. 5% of those people are arrested.  2/3 of police officers report that they have had no training in interviewing individuals with Autism.

Baron-Cohen states, “It is clear that just by examining these 6 articles, people with Autism are still falling outside our human rights and therefore face huge barriers towards autonomy and self-determination. “

While Autism awareness is very important, I think this examination of human rights proves that we need to do more. We need to have a call to Autism action. We need to be more accepting, more understanding, more than aware. All people have the right to live their lives to the best of their abilities, however, we need access to our human rights in order to begin.  We all have a role to play. What can you do?

 

 

 

 

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The Gottschall Access Program – A College Experience for Adults with ASD

“There are two primary choices in life: to accept conditions as they exist, or accept the responsibility for changing them.” Denis Waitley

We have thought, and said, and advocated for a long time that the adult services available for individuals with ASD do not match their needs and strengths. However, saying this has not changed the landscape for our individuals.  We are starting a new program that we hope will support some of the individuals who could benefit from a different structure than what is currently available.

The Gottschall Access Program is the culmination of work between The Gottschall Foundation and Community Autism Resources.  For the past 4 years, the Gottschall Foundation has hosted a summer college program for adults with ASD. Each year that program has grown and transformed into a more comprehensive and diverse program.  With each adaptation that was made to the program, the students rose to the challenges and requested even more. They wanted not only a summer program, but a full year program, a college program, a certificate of achievement.  We listened…and we believed.

In September of 2016, we will launch the Gottschall Access Program (GAP). The Gottschall Access Program offers adults on the autism spectrum a unique opportunity to enhance their lives, vocational and social skills. This will further enable them to participate in internships, and then eventually the pursuit of gainful employment. This will take place on the Fall River, MA college campus of Bristol Community College. Here, students will enroll in a 3-year program of specially designed courses and have full student access on the college campus.

The program will offer 3 main branches of concentration for career and internship development:

Paralegal Support
Purpose: to teach highly marketable job skills; allow students to utilize organizational and consistency skills; and to provide the students with a foundation for internships within the Massachusetts Court System

Theatre
Purpose: To improve communication skills; social skills; and confidence

Organic Farming

Purpose: to provide nutritional education; work skills; physical activity

Students will be placed in an internship in their desired field, and receive a Certificate of Completion from Bristol Community College upon fulfilling all program requirements. All courses focus on developing self-determination skills, critical thinking and soft skills. Students construct a career pathway throughout their program that is specific to their learning styles, strengths and interests.

In addition to these courses, students will also complete Enrichment and Health courses every semester.  These courses will aim to broaden interests and discover new skills while also promoting a healthy lifestyle that includes diet, movement, safety and stress management.

By designing and offering this program, we hope to broaden the options that are available to people with ASD while also showcasing the skills and abilities of this community as employable and valuable members of society.  We have been talking for too long…it’s time for some action.  We hope this program will be as successful as we know it can be and that everyone will continue to look at creative and innovative ways to support and nurture our very unique population of adults with ASD so that we can create reciprocal relationships utilizing everyone’s strengths and needs.

For more information about the Gottschall Access Program, please visit the website at Gottschall Access Program

 

Taking a Creative Look at Adult Programming by Kate Dansereau

This summer, through Community Autism Resources, I had the distinct honor of being a teacher in The Gottschall Autism Foundation’s Access program.  The program is the brainchild of the Gottschall Foundation’s Board of Directors and was implemented in collaboration with People, Inc and Bristol Community College.  The goal of the program is to create meaningful, accessible and applicable higher education opportunities for individuals with ASD who could not otherwise successfully access traditional college programs.

The focus of the summer program was broken down into 3 programs – Drama & Performance, Organic Farming & Growing Skills and a Paralegal Support Program.  The program was held twice a week for 8 weeks from 11:00 – 4:00.  During that timeframe, each class was held for a duration of 1-2 hours.  The students also ate lunch in the cafeteria and had free time between classes to stretch, walk, relax, socialize and explore a predetermined area of the campus.  Each instructor developed their own curriculum specific to the interests and learning styles of the 13 students in the program.  We were also fortunate enough to have a program director who attended all of the classes, provided support when necessary, took care of all administrative duties and was there to troubleshoot issues that might otherwise take away the instructor’s attention to the class. The students were diverse in their needs, some had 1:1 support, others arrived independently on public transportation, but they all shared a motivation to learn, an excitement for new opportunities and a love of the social experience they all enjoyed.

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I was the instructor for the Paralegal Support Program.  This class taught students skills such as stapling, collating, filing, shredding, photocopying, scanning, packet and file assembly and all the intricate details and tasks that are involved in each skill. In addition to the job skills, we focused on the general rules and expectations of having a job: dress code, cell phone policy, security procedures.  We also discussed anxiety and stress and practiced calming strategies, meditation and mindfulness weekly.  And finally, and perhaps most importantly, we learned about the social rules or expected behavior in a court or office environment: appropriate greetings in the workplace, how to ask for help or clarification, what to do when your work is completed, what to do if you’re feeling dysregulated or overwhelmed and need to take a break.  We learned through video, photos, lecture, hands on practice, technology and iPad apps and role playing.  The Gottschall Foundation has partnered with the Autism Higher Education Program to provide internships for the Paralegal Assistant students who have mastered the skills necessary to intern in the Probate Courts throughout the commonwealth.   Three of the Access Program students have the opportunity to intern in the fall.  We hope to increase this opportunity to other courts across the area as well as possibly other office environments.  The drama program held a wonderful and highly attended performance at the end of the program where each student performed at least one act which throughout the summer they had chosen, practiced and choreographed. I was sincerely impressed at the level of talent that I witnessed that night.  The organic farming program created a farmstand that same night where they sold different sizes and varities of basil plants that they had planted and cared for during the semester. They also offered a “pesto kit” that included all the ingredients along with a basil plant to make homemade pesto.  They created signs that included recipes and healthy facts about the basil plant.

I feel the program was a huge success! Of course there were some key components to that successs.  The first, I believe, was the creativity and flexibility that went into the design of the program.  We can no longer (and never should have) expected all adults needing daily support to fit into the same programming structure. It’s not fair and it’s not realistic.  Everyone’s skills, challenges, interests and personalities are different…all of us! We need to look more creatively at how adults with ASD are spending their time.  I can’t count how many times a student would comment to me during the program that they loved being in college. The students were proud, motivated, accountable, and learning real life skills.  Of course the other components necessary for success are to have instructors who are not only passionate about their subject, but knowledgeable about the learning styles, challenges, strengths and needs of an adult with ASD.

I am so grateful to have been a part of this program. I believe I learned and gained as much as the students throughout the summer.  I hope we can continue to expand opportunities for adults with ASD through more creative programming.

Sometimes We Just Need to Shut Up

Every other Wednesday, I take my sister to the gym with me.  We have a routine of 20 minutes on the treadmill and then 20 minutes on the bike.  Usually this time together runs pretty smoothly and we complete some exercise while enjoying some time together.  My sister is very schedule oriented. When there is something to be done, she will do it and do it all until it is done whether she wants to or not, because damnit, that is what is on the schedule.

On this particular gym Wednesday, things were not going so smoothly. I was running later than I usually am.  When I got to her house, I suggested that we JUST do the treadmill today since we were running late and I had another appointment to still get to.  So far, she was taking all of the change in relative stride.  There was some slight humming on the way to the gym, but nothing major.  When we pulled up to the gym, the bracelet she had made at her program that day fell off. As she tried to retrieve that and her ID for the gym, her scarf fell off. The humming got a little louder.  We got into the gym and the very sweet girl at the desk helped Julie tie her bracelet back on (sidenote: sometimes you have no idea how much a little act of kindness like that goes for us families!).  We searched for 2 treadmills together and could only find singles, so I set Julie up on one with an elliptical in front of it that I could use. Of course, the TV on her treadmill wasn’t working…of course!! However, she was still doing ok.  I hopped onto my torture device, I mean exercise equipment and about 2 minutes later I heard it. The noise. The noise that Julie makes that I am sure many of my fellow family members are familiar with. The noise that goes through every fiber of your body like nails on a chalkboard.  This noise is so emotionally insulting to me for 2 reasons: 1. Because it is such a tone and pitch of humming and whining and quiet screaming that it’s physically uncomfortable to hear. 2. But mostly because it means my sister who I love so much is getting upset, and I won’t know for sure why or how to help her because she can’t tell me. I turn around and her treadmill has stopped. She must have accidentally pulled the emergency stop button.  By this time, of course the 2 treadmills on either side of her have cleared (hmmm, I wonder why?) so I set her back up and get onto the one next to her. It’s too late. She is beyond upset. She is making the noise, biting her fingers, crying, trying to take deep breaths, shouting  “ I want to stay on the treadmill!!” and responding to every verbal bid I throw her way with a very loud “NO THANK YOU!”

Common sense would say, well let’s just end this activity, right? She clearly is uncomfortable and doesn’t want to do it. She would be more comfortable at home or in the car with less sensory distraction. I would be more comfortable with less eyes casting judgemental stares and questioning looks.  However, you must remember, that no matter what…Julie must finish what was on the schedule. That means 20 minutes on the treadmill. She is no longer hearing my language when I say “let’s just do 5 minutes”, “let’s just be all done”, “20 minutes is all done!” (lie) and every time I talk she responds with “NO THANK YOU!!” This is the point where as a sister I start to panic, I lose all semblance of being the Autism Consultant that I am, because this is not a student or consumer, this is my sister.  And then it hits me…SHUT UP! Stop talking, she is not hearing you and you are just adding more stress to her system. So I pull out my cell phone and open the Memo app and type this:

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I place the phone so that Julie can read what I’ve typed.  She looks at me with wild eyes and says “I want to go Jen’s house for dinner” She stops the treadmill and heads towards the locker room. Oh my God! Phew!  Relief washes over both of us and we head over to Jen’s house for dinner.

I say this in my professional world all the time: Sometimes we need to change the communication mode.   We know that when people with Autism become upset and dysregulated that they can no longer access their language – expressive and receptive. By writing something down, a person is able to slow down the processing necessary for understanding what is being communicated. Spoken language is transient…you say it and it’s gone. When you write something down or draw it out, it becomes static and a person can reference it for as long as they need to process it.

I learn some of my biggest lessons from my mistakes, and Julie has been my greatest teacher.

Why Simply Getting an iPad is Not Enough

By: Kate Dansereau

I hear it so often: “We NEED an iPad!” Everyone thinks that their son, daughter, student, classroom, consumer, etc. needs to have an iPad. Don’t get me wrong, I love the iPad. I think it is an excellent piece of technology and has many uses that can support individuals with Autism.  I think Apple has been receptive and proactive in customizing and adapting settings for the iPad for people living with disabilities. I think there are many app developers who have created comprehensive and robust apps specifically for people with Autism. However, I do not think that the iPad is the answer for everyone.  I also think before anyone pursues getting an iPad for a person with Autism, they need to consider the following questions:

  1. Is the iPad the right fit for this person? We all know that when it comes to Autism, there is no cookie cutter approach. So why are we looking at Assistive Technology (AT) as a one size fits all approach? There are many things to consider when looking to obtain AT for a person with Autism.  There are many different types of technology available and the iPad is just one of many.  The iPad utilizes a touch technology.  This is very intuitive and immediate platform.  For some people this is great. For others, it is not a good fit.   It requires fine motor control to isolate the spot to touch and then additional motor control to press and release at the right spot with the proper timing.  Touch and swipe is not necessarily an easy gesture for all to perform (just ask my Mom trying to look at pictures on my smartphone.) There are many other platforms to consider including computers, stand alone communication devices and even low tech solutions like visual schedules made on good old laminated paper and Velcro.
  2. What do you want this person to be able to accomplish with the iPad that they are unable to perform now? I think this is probably the most unasked question in AT. I have met so many people who needed to have an iPad in their life and it has become either abandoned or a very expensive Angry Birds handheld game.  It is crucial to know exactly what you are hoping to achieve by integrating an iPad into a person’s life.
  3. Can everyone receive proper training? It is very important that not only the person using the iPad, but also the people who support them receive proper training on using the iPad to the best of it’s ability.  I have also met many people who think since they own an iPad or an iPhone that they know all they need to know. I have also yet to meet someone with that belief that I haven’t been able to teach something new to. It is so important for support people and family to understand why the person is using the technology in order to support them effectively.  There needs to be a unified belief and approach across environments in order for the use of any AT system to be successful and sustainable.
  4. Will the person like this technology? If a person needing  support does not like the device you are asking them to use, they will not use it. It’s unfair of us to assume that they would, just because it is available to them

There are many more considerations to keep in mind when choosing technology as a support for a person with Autism. This process should really be guided by an Assistive Technology Professional who can perform the proper assessments and provide some trials and support.

The Adventures of a Super Sib…Now where did I put my cape?

Why is that as soon as a child receives a diagnosis their brothers and sisters suddenly become siblings? Why does that relationship become scientific instead of natural? Sure, my relationship with my twin sister is different from my relationship with my older 2 sisters, but just because Julie has Autism doesn’t make her any less my sister, or any more a sibling.facebook_1408022731682
I have had many families ask me what it’s like growing up with a sister with Autism. I am never sure how to answer this question. I don’t know what it’s like growing up without a sister with Autism. Life with Julie has certainly had it’s ups and downs, but so has growing up with Jennifer and Alyssa. Julie has definitely brought opportunities and life lessons into my world that I may have otherwise not taken advantage of. My whole family has been deeply entrenched in Special Olympics ever since Julie strapped on a pair of roller skates and turned our front yard into a roller rink at the age of 6. Coaching and participating in Special Olympics has brought me a joy and a sense of responsibility that I am not sure I would have even considered if Julie were not in my life. I am more accepting of differences and challenges and a fierce advocate for those who cannot defend themselves. Would I be a different person if Julie hadn’t taught me these things? I am glad I will never know.
Not that life with Julie has been all positive. It’s frustrating. Very frustrating. My biggest challenge with Julie has always been our communication barrier. I cannot count the amount of times I have wanted to be able crawl into her brain for just a few minutes to find out what she is thinking. Like why does she insist on wearing a jacket when it is 90 degrees outside? Mostly it is frustrating when she is upset and we have no idea why. That has to be worst part about Autism in my experience. As a sister you want to support and help your family and you can’t always do that when your sister cannot tell you what is wrong.
And of course there is added worry that I don’t necessarily have for my other sisters: Is she living the best life she can? Who will take care of her when my Mom is gone? Is she happy? There is a piece of that relationship that becomes more parental than sisterly. But who hasn’t gone Mom mode on a brother or sister at some point in their life?
We don’t have that typical relationship that sisters have but we have certainly found our place with each other. We commiserate at the gym together, we fight over the iPad, we spend girls’ nights out together and Sunday family dinners. We don’t have heart to heart conversations about our weddings and what we wanted to be when we grew up. However, we do have an unspoken bond and I will take the whispered random “I love you” while we are going for a walk over the wardrobe arguments any day. When it comes down to it, life with a sister with Autism is the only life I know. And I am pretty sure I am a better person for it.