437 S Yellowstone Dr Ste 217A, Madison, WI 53705 info@autismsouthcentral.org (608) 630-9147

Waisman Center recruiting autistic boys for a study

The Waisman Center is recruiting boys with fragile X syndrome and boys with autism spectrum disorder between 9 and 18 years old for a research study. Info below:

online-posting

MRI-FXS-ASD-brochure-7-6-18

Waisman Center Opportunity for Families

We received this opportunity from the Waisman Center to pass on to families:

Mentor Family for the Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities (WI LEND) Program

Three quick questions:

  • Are you a family member of a child, adolescent or young adult with a
    developmental disability?  
  • Would you like to help future professionals learn more about families’ experiences raising a child with a neurodevelopmental or related disability?
  • Are you interested in an opportunity to influence future systems of care for all children and youth with neurodevelopmental and related disabilities by meeting with a pair of future professionals 4 times over about 4 months?

If you answered yes to all three questions consider being a LEND Mentor Family!

What:  The WI LEND program is an interactive leadership training program for professionals, family members and self-advocates who will work with individuals with developmental disabilities.  An important part of LEND training is the Family Mentor experience. In the Family Mentor experience, a pair of LEND trainees is matched with a family of a child with disabilities. The trainees and Mentor Family meet four times over about four months allowing the trainee to learn directly from families of children with disabilities what it is like to raise a child with disabilities.

Mentor Families are expected to meet four times with their pair of trainees:

  • Invite your trainees into your home (First Visit)
  • Include your trainees in activities your family does outside your home; such as, school related visits, doctor or therapy appointments, sports or community outings, family events, restaurants, parks, etc. (Second and Third Visits)
  • Wrap-up the Family Mentor experience with your trainees (Fourth Visit)
  • Be willing to answer questions from your LEND trainees throughout all the Family Mentor experience.

When: The LEND Program takes place during the 9-month academic year (late August-early May.)  We try to have all trainees meet with their Mentor Families between late September and January.

Where: your home and community

Why: The Family Mentor experience allows future professionals to gain insights into the families’ perspective by hearing about and participating in families’ lived experiences and asking questions they may not otherwise get to ask. Trainees learn about the need to understand families’ experiences, what’s important to families’, what works well for families and what doesn’t, and what they as professionals can do to help improve the systems of care families rely on.

The Waisman Center offers financial support (stipend) to qualifying Mentor Families. The stipend is intended to offset expenses you might have that relate to being a Mentor Family for the LEND training program; i.e., outings, transportation.  The typical stipend is $200.

Visit our website for further information: http://www.waisman.wisc.edu/mchlend/ 

If you are interested in being a LEND Mentor Family or have any questions please email Sandy Tierney or stierney@wisc.edu.

Thank you for making One Walk, Big Strides for Autism a success!

We had our highest fundraising results to date with over $20,000 raised to support our local autism community! It takes a ton of work by a lot of dedicated volunteers and community members to make this possible and we want to sincerely thank each and every one of you!
Walk summary:
· Over $20,000 was raised!
· 750 Walkers participated
· 35 Teams were formed
· 2 Teams raised over $900 each
· 9 Individuals that raised over $100 each
· Over 40 Volunteers helped with everything from street crossing to donations
· We had 3 fantastic Sponsors
· CI Pediatric Therapy Center
· KGH Autism Services
· A1 Furniture

We do this walk every year to raise awareness and funds to support those affected by autism in South Central Wisconsin. All the money raised stays local and goes directly to programs that provide support, education and activities for individuals on the spectrum and their families. Funds raised at this walk will enable us to continue programs like Autism 101 workshops, AUsome social groups for people on the spectrum, support groups for individuals on the spectrum and parent support groups like Mom and Dad’s night out as well as workshops for siblings and scholarships for students on the spectrum.

Here’s a gallery of photos from the walk. Thank you to Rob Streiffer for taking them!

Please Participate in our 2019 Autism in Wisconsin Survey!

The Autism Society Affiliates in Wisconsin, in collaboration with the Wisconsin Care Integration Initiative at the UW Madison Waisman Center, are launching the Autism in Wisconsin 2019 Survey.
Your responses will influence Autism Society programming, influence policies and legislation, and help us document how experiences of individuals and families change over time.
The survey takes approximately 10-15 minutes to complete. By entering your contact information at the end of the survey, you will be entered into a drawing for a $50 Amazon Gift Card.

Autism Awareness & Acceptance Day at the Capitol

Thank you to everyone who came out to the capital on April 3rd to support Autism Awareness and Acceptance! A special thanks to Gov. Tony Evers and Sen. Roger Roth for their support and to Jonah, Erin, Matt, Al and Scott for sharing their perspectives!

Click here to see video of the event

Below is the text of Scott Allen’s speech. Scott is a member of our board and is on the spectrum himself:

Speech for 3rd Annual Declaration of Autism Awareness Day/Month in WI, April 3rd, 2019
© Scott E. Allen 2019

I’m Scott Allen. My diagnosis is Asperger’s Syndrome. I spent childhood loving dinosaurs, pursued paleontology in college, had to change paths afterward, then obtained a Master’s in counseling. I’ve been speaking publicly about autism issues since 2002. I moved to Madison in 2016 and did autism-related work at the Waisman Center for two years. Since 2017 I’ve also been working at the McBurney Center as cofacilitator of an empowerment group for UW-Madison college students on the autism spectrum. I’ve been on the board of the Autism Society of South Central Wisconsin since May of 2018. I’ll soon be working at Westside Psychotherapy here in Madison, specializing in counseling adults on the spectrum. I hope to get a Ph.D. to study adults on the spectrum so my research can benefit them.

Autism awareness is the starting line, not the finish line – a first step toward tolerance, familiarity, acceptance, and appreciation. To be aware of autism is not the same as valuing or being open to it, and we must promote societal change beyond awareness. Awareness is the stone that supports the bridge, not the destination on the other side.

With that in mind, I have four points for the general public and the autism community to be aware of.

First: Be aware: autism diagnoses say almost nothing about abilities or attitudes. The autism spectrum is so diverse that most statements about it are very incomplete. It includes people who cannot participate in public life, people who make some of history’s most brilliant contributions, and every other combination of abilities and outlook imaginable. The differences in outcome can outweigh neurological similarities.

In fact, this diversity is so extensive that we are divided within it. Be aware: there are invisible walls in our autism community. Walls between different kinds of functionality, between professional and volunteer communities, between adults on the spectrum and other stakeholders. We still have deep disagreements over the meaning of and response to autism. This splits our political voice. To unify, we must break the invisible walls through personal contact, share perspectives with honesty, civility, and compassion, and seek the best evidence in science and policy. We must focus on positives while addressing negatives, and all our stakeholders should interact so we do not get stuck repeating clichés, but instead devise new attitudes and approaches.

Be aware that autism diversity also means racial, ethnic, gender, ability, and neurological diversity. Autism occurs in all groups of people, yet outcomes for those who are not white, well-off, or normative are usually worse due to social inequality. Let us reach out to all these communities for solidarity.

Second: Be aware that we on the spectrum have existential concerns. We face more than clinical deficits. Who we are? What’s our place in society? Are we legitimate? Such concerns cannot be “cured.” Our distinctive traits unavoidably lead to different worldviews, attitudes, and opinions, which we face every day, so don’t suppress how we naturally think and feel: be aware that our way of being is as legitimate as yours.

We on the spectrum are often asked to tell our life stories, and not much else. We are asked about our development – childhood, schooling, becoming adults. Good questions, but narrow. Ask us also, when possible, about love, loss, hope, fear, why we value or reject, and other inescapable human questions. Most people, including us, don’t speak the language of human complexity, so the complexity of our differences goes unappreciated.
We deserve no shame for who we are, so be aware that mostly we don’t suffer from being on the autism spectrum, we suffer from being dismissed, degraded, and devalued in a culture of excessive ranking, obsessive competition, and a stubborn disregard of other perspectives. Rejecting our own traits does not solve this alienation.

So be aware, communication issues are not our defect – they exist between us and others. Yes, those on the spectrum often have difficulty interpreting others, yet neurotypical people also have difficulty interpreting us. Don’t shame us for a mutual process.

Third: Be aware: we need a model of growth and dignity, not this model of deficit and disorder. Yes, some of us face such severe impacts that growth is minimal and personal choice means only simple preferences. Yet what puts more knowledge, choice, and self-respect into our hands is worth it. Growth and choice are matters of degree, not either-or. Research on Down Syndrome and minority college students shows that growth-oriented attitudes and actions help people do much better.

Be aware that this growth needs challenge. Don’t say “That’s how they are, they can’t change.” Don’t sell us short. To further someone’s potential, you cannot coddle them. Yet I worry you may think “no coddling” means “no support” or “no sympathy,” and that’s false. Healthy challenge needs lots of support and sympathy; without these, challenge is unhelpful, even damaging. Challenge those on the spectrum to grow; don’t push them past their limits; respect their values, goals, and abilities. They cannot “suck it up” or “just deal with it;” what they face is so complex and uncertain they need unique methods. Even we who get by on our own need supports, whether formal or personal, to thrive.

Fourth: Be aware that kids on the spectrum become adults on the spectrum. Those adults are not well-researched, especially those most challenged or gifted. Mandatory supports end at age 22. Serious barriers block adult diagnoses. We face mental health problems since there’s no good path to meet our social needs or find stable jobs that suit our education. About 70% of us are un- or under-employed.

These job problems are mostly about workplace culture, misunderstanding, bullying, and other things resolvable through education, exposure, and accountability. Business owners, be aware: many on the autism spectrum make persistent, loyal, effective workers, with a few accommodations that cost little or nothing. You are missing some of the most consistent, productive employees.

Be aware we’re not all good at math and computers. This stereotype limits our opportunities. Many of us excel at English or art or history, things qualitative, not quantitative. I hope business leaders will stop assuming that “autism” means they belong in the IT department.

Adult self-advocates should be more aware of research, policies, and people that influence autism attitudes. How autism is interpreted is how we are interpreted. This ignores our individuality; others see us through the lens of concepts, groups, and pundits representing voices that are rarely our own. We must be more informed to confidently influence our own destinies.

To sum up, much of what we need is to convince neighbors, coworkers, even friends and family to apply the solutions we already have. We deserve rights and basic respect like everyone, but is this valued? In this community we talk a lot about “treatments” and not enough about how we are treated. Beyond awareness is the freedom to participate in society without being forced away or frowned upon. To accept another human is not based on facts alone; it’s a choice from within. If others choose not to accept us on the autism spectrum, society will devalue us no matter how many studies or supports exist on our behalf.

Awareness is the starting line; the finish line is when others treat us without fear, hostility, insult, or condescension, when we can live with comfort or personal pride, not categorical shame. We will know that finish line has been crossed when we are seen not as social invalids or permanent children, but humans who deserve rights, fair opportunity, and dignity. We don’t all have the same potential; we do all deserve to develop what potential we have.

Reject ignorance, exploitation, and hostility; accept others for who they are and who they can become; reach out to your communities, and look inside yourself for strength.

Thank you, Governor Evers and Senator Roth, and thanks to all who made autism awareness an official position of the state of Wisconsin. Thank you again for the honor of addressing our community.

Be well, and do well.

Donut Decorating with Badgers with a Heart

We had a donut decorating event on Friday, April 5, 2019 at Sequoya Library in Madison with UW Badgers with a Heart. Cassandra and the other BWAH team did a BEAUTIFUL job decorating the tables and setting things up.  Everyone had a wonderful time!

Badgers with a Heart logo

Research Study: Meaning of Work

Researchers are looking for young adults with intellectual and developmental disabilities (ages 18-30) with current or prior employment experience to participate in a research study. They are doing a nationwide research study about the meaning of work in people’s lives. This work will be conducted by researchers at the Texas A&M University and the University of Oregon.

The questions will cover a broad range of topics including current and prior employment experiences, work goals and challenges, personal and professional relationships, and views of work. The interviews, which will last 30-90 minutes, can happen in person, on the phone, or over Skype at a time most convenient for the participant.

They will be recording the interviews to help with data collection. This recording is for research purposes only and will only be heard by members of the research team. They will not use real names of participants or anyone else mentioned.

Participation is voluntary, and participants can skip any questions as preferred. They will do everything they can to make this a positive and comfortable experience. Participants will receive a $15 Amazon gift card for taking the time to talk with them. They will e-mail this immediately following the interview.

The principal investigator is Dr. Carly Gilson, an assistant professor of special education at Texas A&M University. If you are interested or have any questions, please send an email to Dr. Gilson at carly.gilson@tamu.edu.

Great time at the Winter Pool Party

Our Winter Pool Party was at CSA Kids in Janesville on February 16, 2019.   We had about a dozen people turn out for our winter swim and half of them went swimming.   The other half hung out in CSA’s lovely party room, ate lots of snacks, played games, put together a jigsaw puzzle, watched the swimmers through the big viewing window and had a good time.  

The day was cold, but the pool was wonderfully warm.   There were plenty of chairs around the pool for people to sit and watch or just take a break.  The pool didn’t have a diving board, but there were so many different pool toys to use  that everyone had plenty to keep them busy.   There were pool games to play like basketball plus things to dive for and pool noodle “horses” to ride.

A big thanks to CSA Kids for letting us use their beautiful pool and for setting up an on-line registration for us so swimmers would take care of waiver paperwork online.  This allowed us to monitor the number of swimmers we had signed up so we could control the number in the pool.   Hopefully we can have this fun activity again next winter. 

Autistic College Students: What about middle and high school helped (or hindered) your college success? A Research Opportunity

Who: University/college students or graduates who are 18 -25 years of age who have been diagnosed as being on the Autism Spectrum. 

Time Commitment: Participation in three interviews with each session lasting no more than 1 hour.

Where: Interviews happen on campus or at a library at a time of your convenience.

Compensation: $100 gift card

The Autism Society of South Central Wisconsin is assisting Ph.D candidate Michael Sullivan (who himself is on the Autism Spectrum) in recruiting participants for the research study explained below. Participation is strictly voluntary and participants can withdraw at anytime.  Please contact Michael Sullivan directly if you are interested. 

The study is investigating the life histories of university or college students or graduates who are on the Autism Spectrum to discuss their time in middle and high school and how these lived experiences impacted students’ success in pursuing post-secondary education.  

Your participation in the study will help us understand what works in schools and what hinders students on the Autism Spectrum in achieving success in middle and high school and eventual attendance at university or college.  

If you can participate, or have any questions about the study, please contact: 
Michael Sullivan 
Ph.D Candidate, Department of Curriculum and Instruction, School of Education, University of Wisconsin Madison 
E-mail: Sullivan25@wisc.edu Phone: 608-695-0287