Passion

If you’ve been a part of the autism community for any length of time, there is a very good chance that you’ve come under attack for what you think, the decisions you’ve made, what you believe or very simply, for who you are. This is, sadly, a fact of being a part of this great community.

I say “great” because I’ve seen some amazing things such as great new friendships, new programs being born, wonderful learning opportunities and of course, mutual support. Just being there for each other can make all the difference in the world sometimes.

Unfortunately, this community, for all its strengths, requires a certain amount of armour. If not armour, then strength and conviction. At some point, inevitably, you will be attacked and that attack will come from within the very community that is supposed to be so “great.”

For most people, this happens early on as your child is diagnosed with autism and you struggle to understand and even worse, struggle to accept it. The words you choose to use in this time, no matter how carefully chosen, will be turned back on you and made to cut you like a knife. Wrong decisions, grim outlooks, uncertainty, fear, pain… these are things that nearly every parent ever has gone through when their child is born to be anything but perfect healthy and diagnosis free and yet, very quickly, we forget these things and turn to judge harshly the parents that fallow behind us.

From there, just about anything you can say or do will be cause for attack. C-sections or natural birth, cloth diapers or not, breast feeding or not, vaccines or not, acceptance or cure, medication or not, therapy or not, special education or not and so on… the list does not end. And don’t think that you’re safe by not having an opinion one way or the other on any particular topic because then you’ll just be attacked for that.

The trick to overcoming this mentality is in recognizing its source, passion. When people are talking about children, especially their own children, they get extremely passionate. We become so protective that we don’t even realize that we’re slowly becoming monsters as we try to protect every child over the entire planet from anyone that might not think or do what we would, even if it’s their own parents.

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We must recognize this passion in ourselves and monitor it so that we don’t let it consume us but we also must recognize it in each other so that when we see someone lash out, we can understand where it comes from and that it’s not personal.

Our passion is one of our greatest strengths as it leads us into battle against the governments, the education systems, the medical systems and anyone else that would try to get in the way of the services that our children need but it can also become one of our greatest weaknesses if we let it divide and even hate each other.

We must pledge to ourselves and to each other, all together, that our story is our own, our beliefs are our own, our decisions are our own and our lives are our own too. We won’t all travel the same path and that is ok. We might end up at the same destination and we might not and either way, that’s ok too. Every single person with autism, whether ourselves, our children or anyone else is different. That’s not just ok, that’s wonderful.

I’m sure you’ve heard the expression “when you’ve met one person with autism, you’ve met one person with autism” and that’s what makes each story so valuable. How can anyone ever hope to understand autism or its level of diversity without being willing to listen to each person’s story and each person’s thoughts on it? No one should ever bully you into feeling like you can’t share or be who you are and conversely, you should never attempt to bully someone else into feeling bad about sharing or being who they are.

We can guide each other, lead each other and support each other without having to hate each other. We can educate each other without attacking each other. We can be a great community without the need for armour.

Harness your passion and focus it where it needs to be and learn to let it go when you need to. We all grow stronger when we work together. Our differing ideas and beliefs can lead to new ideas and to new beliefs. We can accomplish so much if only we stop trying to hurt each other.

I’ve seen a lot in this autism community over the years and the best and the worst of it were both powered by the same energy source, passion.

How will you use your passion?

Stuart Duncan is a man with Aspergers, 2 children (1 with autism, 1 without), an autism blogger, and creator of Autcraft, the first Minecraft server for children with autism.

Posted in All Posts, Autism, Guest Blog, Inspirational

Greetings From Kenya

DJAMBO FROM KENYA! BARIYA YAKO.

First and foremost, we are alive and well, maybe sick here and there, but alive.   I wasn’t too sure what to expect when I got here, but it has not been too different as far as daily tasks that I would do back home.  I guess the biggest difference is the culture, food, and the time change.   What are we doing out here?  Let’s get to it.   We’re currently providing assistance to the workers at Kaizora Consultants in Karen, Nairobi, which is being operated extremely well.   I was so shocked to see the number of males working here in comparison to the number of males I come into contact with back at home working with the same population of individuals.    And honestly, I thought I brought excitement to my sessions, but never mind.  These men here are full of energy and they really enjoy what they’re doing.  It’s great to hear that some of them, or maybe all of them, are pursuing a masters degree in a related field and are constantly asking questions trying to understand applied behavior analysis.

So it has been quite the adventure thus far and we’re all excited for what’s in store for us in the several days here.  All in all, the kiddos are great to work with and they sure do make us laugh here and there.  We’ve been learning Swahili from generous and patient people who hear our attempts at speaking their language.   Our team has gone on our own adventures outside of work, which has been delight due to the abundance of animals we see out here.  Side bar, there are baboon crossing signs here!

Anyway, I can’t thank my supporters enough because without you, I simply wouldn’t be here.   Thank you mentors who have taught me so much about applied behavior analysis and my colleagues out there who share our love for this field.   Thank you familia!  I hope you’re all doing well back in the states.  I sure hope to see most of you when I return for some In-N-Out and AYCE KBBQ.   Until next time, lala salama.

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Posted in All Posts, Autism, Autism Research, Kenya, Stories from the Field, Travel

Sucess with EI and the ABLLS in India

During my time at SOREM, I was able to work closely with the two wonderful early intervention teachers. I didn’t know much about the program before arrival because it is only a few months old. After sitting in a few sessions, it was clear that both teachers have developed a strong understanding of Applied Behavior Analysis and I was thrilled to see the teachers putting the principles of ABA to practice!

A primary focus of our trip was to provide additional training and support in assessment and graphing using the ABLLS. We met with both EI teachers to review data and choose one student to assess together. They were already familiar with the ABLLS process but were not yet experienced in graphing the results. We scheduled a Saturday workshop open to any teachers interested in learning to score and record ABLLS results. We ran a mock assessment and asked teachers to follow along in the ABLLS books and record the data on their own grids. After about six tries, one of the EI teachers asked if we could leave the workshop to graph her student’s data because she felt so comfortable with the process. Before the workshop was over she was finished graphing the data from a student’s first assessment, and before the week was over we completed and graphed his second assessment together! That week, both EI teachers completed the ABLLS grids for one student’s first and second assessments and felt confident administering and graphing the second assessment for their other students after we left.

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SOREM is full of dedicated and talented teachers. It is so encouraging to know that two of those teachers have a thorough understanding of the ABLLS  and feel confident administering the assessment and explaining it to others. I’d say that definitely passes a fly away test!
After two weeks at SOREM, I feel like I was truly able to experience what makes The Global Autism Project and Skillcorps so unique. It’s not just a two week intensive training in ABA. It’s an ongoing collaboration of dedicated and passionate professionals around the world working to improve the lives of individuals with autism. What an exciting thing to be a part of!

Cailey Rodgers traveled with a Global Autism Project SkillCorps team to Chandigarh, India in July 2014.

Posted in All Posts, Autism, Autism Research, India, Stories from the Field, Travel

A Common Language

Sweet dish, laning in progress, tiffin, milk sweets, use dipper at night.  Blow horn.  Uninflected verbs and a lack of auxiliary verbs. Changes in syllable stress and vowel shifts. I have spent the past two weeks utterly fascinated by Indian English. As a speech pathologist, I am, perhaps, more aware than the average person of what makes Indian English different from standard American English. And I love it.

 

Some differences appear to be due to the level of English proficiency, and others appear to reflect a real dialect, though mine is a very informal observation based on only a few weeks in the country!

 

Diversion ahead. I am never hearing this before.  Highly in-flammable.  Kingfisher Strong. Adjectives are often placed after the noun.  

 

Other words, such as dhaba, haveli, lakh, krore, acha, tikke, and danyevad have re-entered my lexicon (spelling highly questionable). I assume they come from Hindi, but I know that I have also heard lots of punjabi over the last two weeks.

 

How do you manage in a country with dozens of native languages?  How do you function as a single national unit?  What does a country keep, or choose to discard, from its colonial history?  English is part of the answer in India, depending on your access to education, socioeconomic status, or trade.

 

While I have spent the last two weeks soaking up all the differences between India and home, I am also very aware of the similarities. Especially at SOREM. A clichéd segue?  For sure. I see such similarities in the caring of the teachers, the playfulness of the children, and the challenges faced by the students with autism.

 

Autism presents with the same symptoms in India as back at home. Societal reactions, and available treatments differ vastly.

English helps to facilitate the ebb and flow of people and commerce in India. As schools, such as SOREM, embrace the tenets of Applied Behavioral Analysis and functional communication, we can hope to achieve a common language of autism treatment in this amazing country. Having spent the last two weeks with the children and staff at SOREM, I find it easy to be an optimist.

 

Kathryn Helland is the trip leader for India 2014

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A Day in the Life at SOREM…

Do you remember being eleven years old, sitting in your Life Science classroom with twenty of your peers, watching the Magic School Bus and School House Rocks videos? I can see my prepubescent, freckled face staring wide-eyed at the TV positioned above the dry-erase board thinking, “Gee, if only my teacher could drive us through the nostrils and blood veins of one of my classmates, then I could really learn.”

I realize now, in my budding career in an Autism classroom, just how unreasonable it was to compare my teacher to Ms. Frizzle, and that a field trip to the moon could be a bit pricey for the public school system. The reality of our education system and its limits has become increasingly apparent to me over the past two years, but in 5 short days at SOREM School for Special Children in Chandigarh, my current reality has been drastically altered. In the life I know, teachers in America are cursing those full moon Mondays when the overhead projectors simply refuse to cooperate, the laminator decided to spontaneously combust, and the coveted color copier is all the way on the second floor of the eighth grade wing of the school… and that particular copy room doesn’t offer baked Cheetos in their vending machine, of course.

A day in the life at SOREM is slightly different…

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The existence of the school lies in the loving hands of Miss Promila, a beautiful woman who has been blessed with over eight decades of life and continues to care for these special children and their families every single day.

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When we entered the school last Tuesday, we walked in equipped with bulleted lists of ideas and proposals and walked out in an honest state of awe. Not only were these teachers managing to run fully functional classrooms in a world with limited resources, they were thriving. There were no rooms of shelves housing stacks of printer paper or boxes of back-up staplers. No cellophane packaged textbooks or iPads charging in a library.

Teachers were using ruled notebooks with hand-drawn activities like matching identical objects or connect the dots. And these weren’t created months ago; each workbook is filled with completed tasks while the remaining pages are blank, awaiting the impromptu moment at which the Ma’am will create a new lesson.

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Glancing at my jottings of “innovative” ideas for creating functional learning in an environment with limited resources I realized that, while our help is certainly needed at SOREM, our role would not be needed in the field of creativity.

These incredible teachers have created homemade workbooks with corresponding activities, counting and sorting stations with shoeboxes, water bottles and rocks wrapped in aluminum foil. I never imagined an exacto-knife could turn a piece of cardboard into so many independent work stations, but I’ll certainly be thinking twice next time I thumb through the pages of a school supplies catalog.

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The use of positive reinforcement is continuing to spread and resonate throughout the school, which was incredible to see in the classrooms that have been a part of the Global Autism Project training programs for a few years. And yet again, the amazing teachers make the lack of resources an impossibly minute obstacle. Rather than computer breaks and cartoons, the students take time between lessons to dance with each other, jump in the air and laugh with “the Ma’am.” There’s an independence that’s not always present in American special needs classrooms, as the older students help walk in the younger and every student is taught to praise and clap for each and every accomplishment. With a higher student-to-teacher ratio, these kids are learning to not only take care of themselves, but help each other.

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Our team is working diligently in the classrooms, working one-on-one with teachers as well as parents, leading workshops and discussing functional communication over Masala Chai at Tiffin (tea time). We are making suggestions when needed, praising endlessly and encouraging the incredible work that is already taking place at SOREM. The school is collecting data, running assessments and building on the research based foundation which will continue to expand with every SkillCorps team that walks through its doors.

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And in my first five days at SOREM, I have learned far more than I can write in one sitting. When I return to America after my time abroad, I will likely feel a strong inclination to create my classroom bulletin boards with crayons rather than perfectly designed WordArt printed on laminated cardstock. My desk drawers will be filled with bottle caps and paper towel rolls saved for penniless activity stations. And I will always thank the teachers at SOREM for teaching me a lesson in innovation, the power of creativity, and the genuine laughter that can come from a casual, foot-stamping dance.

Posted in All Posts, Autism, Stories from the Field, Travel

SkillCorps Peru: And it’s only the beginning

Our first day in Peru was a very touching experience for me. We attended a workshop held at the University of San Martin de Porras by Mapy Chavez where she presented to parents of children with autism. I was really shocked that these parents had amazing questions to Mapy. Like, “what does research say about gluten-free diets and autism” and “my child is being excessively negatively reinforced with food at school”. The fact that some of these parents are willing to try anything for their children shows how much love they have for them. I spoke to a mother who had traveled by bus to listen to Mapy’s presentation and it really moved me. Another heartfelt experience for me was when another mother came up to me and asked me about how she could get more information about being trained by me. Without knowing anything about my profession, this mother wanted me to help her child.

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After our workshop we went to eat lunch at a very delicious “sanguchera” or sandwhich place. We also had dinner at Larcomar which is a popular shopping mall. On Sunday we had more team-bonding experiences at the historical center of Lima. I have been exposed to anticucho (cow heart),  papas a la huacaina, and salchipapas. Overall, I’ve had a great time so far in Peru and we have not yet even began with our training at Alcanzando.

- Alma

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Intern Impressions: Part Two

We started off this week with our very first Staff Meeting! It was a great way to start off the week. Here is an insider’s peek on what’s happening here at the Global Autism Project. Happy Monday!

This week we had our first staff meeting. At the meeting we reviewed how weekly meetings usually operate, and looked over the form that usually gets filled out before every meeting. Each of us discussed what projects we have been working on recently. It was really great to see what everyone has been working so hard on over the past week, and to be on the same page as everyone. We discussed an upcoming project to track online activity of SkillCorps volunteers, collect data, and track their success in fundraising. We also discussed the difference between administrative training calls and clinical training calls with our partners, and how each of them work. Overall it was a very successful meeting and it was great to learn more about how the Global Autism Project works and how each of us is contributing to the success of the organization. -Jaime Berghorn 

June has been a really exciting month for the Global Autism Project. We had the opportunity to visit the United Nations for their Speaking Colors event, the opening of  Debbie Rasiel’s exhibit, Picturing Autism, took place, we return to Peru on June 30th, and especially exciting for us, has been our move to the Brooklyn office! Even more exciting, though, is everything that has been going on behind the scenes. At our staff meeting today, I got a chance to see what my other fellow interns were up to, and everyone has been doing so many amazing things! From expanding our borders on social media, by means of Pintrest and Tumblr, to working with our SkillCorps members in marketing and fundraising techniques, the Global Autism Project is growing in many different areas and I couldn’t be more excited to be a part of all the excitement! It is just the beginning of many great things to come. - Liz Cruz

Today was our first staff meeting, and my first official staff meeting ever. Sure, I had similar meetings when I was a camp counselor, but those were filled with trivial issues like figuring out how to get as many campers to shower before the hot water ran out as possible and what the best way to sneak rice krispy treats from the kitchen was. A Global Autism Project staff meeting is filled with ideas and updates on how the organization is working as a whole to make the lives of our partners and the children they work with easier. Molly encourages us to ask questions and rather then insinuating that your questions are silly, she praises each one and answers it as though she was being interviewed by Bryan Williams. It was interesting learning the way the admin and clinical calls are run and exciting to know that Alex, one of the men employed by the R.A.S.I.E program, is going to be trained in collecting the data from these spreadsheets proving, yet again, that the Global Autism Project practices what they preach. -Molly Dickman

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Picturing Autism

“When you think of autism, how do you picture it?”

On May 29th the SOHO20 Gallery began boasting breathtaking photographs by Debbie Rasiel in her incredible exhibit, “Picturing Autism.” Her exhibit focuses on children with autism from all around the world. Her work emphasizes the universality of autism, and eliminates borders, creating one united international forum for autism. The Global Autism Project has been fortunate enough to to travel with Debbie and watch her in action as she captures her amazing artwork.

“PICTURING AUTISM is a composite of disparate landscapes across international, cultural, and socioeconomic divides, inhabited by people of different colors, shapes, ages, and skill sets. It is a collective portrait comprised of improbable elements, coming together and bumping up against each other to create a single experience…” 

Opening night proved to be a success, with an excitable crowd coming out to experience Debbie’s exhibit. Children featured in her work made their way over to the SOHO20 Gallery and stood by portraits of themselves, seemingly freezing time and making the Debbie experience even more extraordinary.

Debbie’s photographs coupled with the passion and excitement filling the room evolved the opening night of the exhibit into an unbelievable adventure.

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Debbie’s artist’s statement & Debbie and our CEO and Founder Molly Ola Pinney!

The next stage of Debbie’s exhibit was a Panel Discussion featuring our CEO and Founder Molly Ola Pinney, in collaboration with Bridget A. Taylor, the co-founder and Executive Director of Alpine Learning Group, and Julie Fisher, the Executive Director of the NYC Autism Charter School. As leaders of education in the autism community, they added another great dimension to Debbie’s exhibit. No bound went unexplored in this exhibit, making it one impossible to top. This once in a lifetime exhibit is on display until June 21st. Don’t miss out on a truly unparalleled experience.

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Our panelists in the midst of discussion!

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The Value of Autism

We would like to thank Lisa Domican for taking time to guest blog for us! 

 Lisa Domican is an Australian living in Ireland. She’s the mother of Liam and Gracie Domican who both have autism. As a parent, Lisa has had 14 years experience of raising her children with autism and has been attending courses and studying evidence based interventions for the last 10 years.As a mother, Lisa fought to understand her initially non-verbal son Liam, and learned to interact with him using the things he liked most. It was the introduction of a simple picture exchange system that prompted Liam to begin imitating and attempting to say the words on the cards he used to make requests.However, using the same picture exchange system, Lisa was able to prompt Gracie to begin requesting what she wanted with pictures but unlike her brother, Gracie did not begin to develop speech until she was almost 8 years old. It was Gracie’s complex picture vocabulary that inspired Lisa to create the Grace App as she wanted to keep prompting Gracie’s independent vocalisations and reward her social interaction.The Grace App for Autism helps autistic and other special needs children to communicate effectively, by building semantic sequences from relevant images to form sentences. Lisa decided long ago that life was too short to put up with other people’s expectations of “normal” and just does what she wants to do. You can follow Lisa on her blog “Living with Autism”. Also check out her TedTalk!

My name is Lisa Domican and I am the mother of 2 healthy, energetic, engaging and good-looking teenagers; who are both very autistic.

I co-created the Grace App along with my daughter Grace and a very clever young Games developer called Steve Troughton-Smith.

Grace App is a picture communications system for smart phones that has enabled 30,000 non-verbal people with autism or other communication disabilities to ask for what they want.

Unlike the multitude of picture speaking apps that followed, Grace app was created to be owned and controlled by the person who needs it. The goal is to give the user, the person with the disability, total control over what they want to communicate, and the means to do it independently.

When you have a child with Autism, the hardest thing is when your kids can’t and won’t interact with you. I felt like a failure as a parent because I couldn’t “reach” them. I made it my life’s work to find a way to connect. I needed them to need me and now they do. I have value in their lives.

I have been fortunate enough to travel around the world giving talks and have accepted international awards for my work with Grace App; but nothing matches the feeling I get when I know that both my children are well cared for and content to be with me at the end of the day. That was the culmination of 10 years of studying and learning about Autism. Achievement unlocked.

Today I am facing into the fact that my son will be finishing school in 2 years and there is no provision in place for where he will go after that. We’ve just gone through a 7-month process of applying for a disability allowance for him, but at no point did anyone ask what else he could do. He basically has no value in our economic system and is seen as a net burden to be managed.

Sadly I see this attitude wherever I go. Autistic people are not worthy of the investment in systemic change that is required to truly enable them to reach their potential and be a valued part of our world.

We know what needs to be done: early recognition, early diagnosis, early evidence-based intervention and life long support. This combination vastly improves the chances for people with an autistic spectrum condition to have equal access to independent fulfilling lives.

The value of their potential contribution has to be recognised in order for the incumbent systems to accept change.

This would be so easy to achieve! Access to high quality primary care professionals trained to recognise autism would vastly improve early referrals. Access to well-trained diagnostic professionals who do not delay diagnosis would enable much earlier intervention. Access to early evidence-based intervention with qualified professionals would improve the quality of that intervention. Access to parent education would enable them to accept and cope more easily with the changes they have to make to support their children.

Individually planned education in settings that suit the needs of the learner would enable people with autism to progress through their academic education, while getting the specialised help they need with life skills in the same setting. Inclusion on their own terms would enable them to learn from peers with support, but also create communities of better citizens who see inclusion in every day society as a right, not a privilege.

I have never been one to look too far ahead in my autism journey. One bite of the cookie is what I say and leave the rest for later when you feel up to it. Adolescence and impending adulthood has forced that giant cookie in my face and I have had to try and nibble around it, looking for the best way in.

Lying awake and worrying into the small hours of the morning never does me any good. So today I choose action; I am going create an occupation for my son that utilises and values his skills with technology while supporting his additional needs.

My aim is to bring together Coders, Developers, big corporations, social enterprise, Behaviour Analysts and politicians to create a “finishing school” for people with autism so they can earn a living in technology or whatever their skill might be.

I’m going to take advantage of the profile I have from creating Grace App and use it to engage the people I need to make my master plan happen. All parents want the best for their children and parents of children on the spectrum are no different.

I want my children to always be a part of my life, but I also want them to have the chance to play a part in shaping their own lives.

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-Lisa Domican and her son Liam Domican!

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-Grace Domican, co-creator of GraceApp!

 

 

Posted in All Posts, Autism, Guest Blog

Intern Impressions

The 2014 summer interns are here! After an orientation and introduction to the organization on Friday, they were put to work Monday morning and have been doing various projects throughout the week including writing newsletters, gala planning and even creating a Global Autism Instagram Page. Below are a few first impressions from some of them.

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Molly: I remember sitting in my sorority house living room, procrastinating studying for finals and stressing that I had absolutely nothing to do this summer. Instead of facing my political science textbook, I decided to Google some internships and apply for the first 10 I saw, one of which being the Global Autism Project. It was the last one I applied for but after reading the description of the organization, it shot to the top of my list as the place I wanted to work. Coming in for orientation I had no idea where I was going, what I would be doing and what I was about to become a part of, but I knew I was excited and slightly sweaty as I ran from the 3 train to Water Street. As orientation began, I quickly realized this wasn’t going to be a coffee run and copy machine internship like most others. No, this was going to be us doing meaningful work for an organization that was lead by inspiring, passionate people who not only deeply cared about the cause they were working for, but also about us and want us to get the most out of this summer.

Although I’m exhausted and don’t want to deal with public transportation ever again, my first week at the Global Autism project has been meaningful for so many reasons. Not only am I doing projects that I love and are geared towards what I want to do in life, which is public relations and marketing, but I’m also learning how a non-profit runs and witnessing its impact not only internationally but also in our own office. Meeting and working with the RAISE employees, Rusty and Alex, is amazing and watching what they accomplish and the respect they are given is truly something that everyone should have the opportunity to witness. I’m excited to see what the rest of the summer has in store!

Molly Dickman is a rising sophomore at the University of Massachusetts Amherst and is the Public Relations Intern at the Global Autism Project.

 

Jamie: This has been my first week interning at the Global Autism Project, and so far I have learned a great deal about the organization’s structure, function, and goals for both the long term and short term.  I was not totally sure what I would be doing here my first week- I was just hoping I wouldn’t be getting people coffee and opening mail. Immediately I was immersed into the laid back and passionate environment of the Global Autism Project. This week I have done research and planning for next year’s gala and attended webinars about fundraising and planning charity events.  For most of my time this week, I have worked on creating the newsletter that will be sent out next Tuesday. For this assignment I researched autism in the news, and included upcoming events and updates for our organization. I am excited to see what the rest of the summer has in store and what I will be working on in the future!

Jamie Berghorn is a rising junior at Villanova and is a Communications Intern at the Global Autism Project.

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