Ask the Expert
My name is Sondra Williams, I am a wife, mother, grandmother, national speaker, and advocate for myself and others. Lastly, I am Autistic. Autism does not define me; it describes only a part of me.
During Autism Awareness Month, I pause and reset my thoughts as I begin to digest what awareness means to me in regards to autism. Awareness has been around for many years now, so you would think it would be profoundly understood by now. Yet, that is far from my truth.
There are so many voices with various messages from “Defeat” and/or “Cure Autism,” to highlighting neurodiversity and able-istic viewpoints. I hear the terms over and over of high functioning versus low functioning, adding label upon label to define this complex disability or as some say difference. So, autism awareness becomes a huge question left unanswered; what should I believe and what camp of thinking do I support?
As an Autistic adult who travels to teach and speak, I meet many teens and young adults who simply struggle in regards to self-awareness and self-advocacy. Many have no clue outside of the diagnostic label what autism is and how it affects them. If one does not know how something affects them or have the vocabulary around their disability, how can we expect them to become great advocates? We must empower their voice through knowledge and teach them the vocabulary around their disability.
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The New Year is here and with it comes those New Year’s resolutions. Resolutions are the goals we set for ourselves for the upcoming year – try to eat healthier, save more money, make time to get to the gym.
This might also be a good time for families to reflect on what goals they may have for their children with autism. I frequently get asked the question, “Do you see this as something my child can do within one year?” Your child’s educational team also has to make this determination when writing goals for the Individualized Education Program.
In thinking about setting goals, take a page from the IEP guidelines and try to make them SMART: specific, measurable, attainable, results-oriented, and time-bound. Instead of, “I want my child to communicate more with me,” think about what is the most important thing they learn to communicate. Instead of “I want my child to read”, maybe “I want my child to read 10 words, or 20 words,” or whatever makes the most sense.
As with any goal, in order to get somewhere, you have to know where you are at. It’s difficult to measure progress if you don’t have a baseline measurement to know what you are comparing to. Additionally, it’s hard to know whether the teaching you are doing is having the impact you want, without occasionally measuring the progress. That’s why data-driven decisions are so crucial. If you have an idea in your mind about what kind of goal you want to work towards achieving with your son or daughter, stop and take a measurement of what their current skill is in this area.
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If your family is anything like ours, the holidays can be a stressful time of year. After the novelty of winter break wears off, my boys quickly become bored and irritable. Unfortunately, this happy time of year can be stressful for many children and adults diagnosed with autism. Whether it is caused by a change in routine or deficits in leisure skills, extended breaks from school can be anything but joyful.
Last year, our family decided to break the cycle of the winter break blues. I had a simple plan in mind: we do just ONE family activity per day. I picked a variety of fun things to do and created a picture checklist to guide each activity. Using this method, our son participated in so many activities that he would have previously tried to escape. What really blew me away was after painting a picture (an activity that typically evoked his most cunning escape tactics), he smiled and said “painting.” Then an hour later, he looked at the picture and said, “paint a picture.” He was so proud of his work! I then realized that this was a strategy we needed to use as often as possible.
For other parents who are looking for new tools to assist them this holiday season, I highly recommend activity schedules. Activity schedules are sets of pictures that show each of the steps needed to complete a task. They help ease the stress that novel activities sometime bring by showing a concrete beginning and end for each task. They are a great way to promote independence while also decreasing the stress parents can feel during family activities. Click here to see an example of a simple activity schedule for a fun, snowman craft.
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In 2010, overwhelming devastation strained governments and humanitarian agencies following the earthquake in Haiti. Our teens and young adults saw the troubling images of toppled buildings, ravaged neighborhoods and despondent Haitians. They asked me, “What are we going to do to help?”
My first thought was Haiti is more than a thousand miles away across an ocean… and we know nothing about earthquake recovery or disaster relief. My second thought was YES! Our program is achieving its mission of encouraging our young people to accept responsibility to help the community both near and far. So, we went to work! We signed up to volunteer at MedWish International, a non-profit agency that sends medical supplies to third world countries such as Haiti. We also planned and hosted our first philanthropic event. We performed our play as a fundraiser for earthquake relief and collected $400, which the group chose to donate to Save the Children Haiti.
The Horvitz YouthAbility program of JFSA Cleveland empowers youth with disabilities and at-risk individuals by engaging them in volunteerism. As a YouthAbility coordinator, my team and I encourage our young people to help themselves by helping others. Our days, evenings and weekends are filled with a wide range of philanthropic activities. We garden, maintain a trail in the Metroparks, assist Holocaust survivors, create artwork, perform original plays with positive messages, help the homeless and more. We want our ambassadors to know that they have the responsibility and privilege of representing YouthAbility, the Jewish Family Service Association and all of the other wonderful people like themselves.
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