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Posts tagged ‘Aspergers’

Preparing for College with Autism

Speaking from personal experience, I know that going off to college as a young adult on the autism spectrum can be an overwhelming prospect, one that many will not be able to overcome. The thought of leaving home for college is scary for every high school graduate; I mean, we’re still kids at that point. But considering the unique challenges that face so many on the autism spectrum, it can be exponentially more difficult. My first attempt at university immediately following high school was, to be completely honest, a train wreck. However, I believe that every failure you make it through brings you one step closer to success, and I learned and grew a lot from that time. Now almost three years later and with much more experience and knowledge under my belt, I have a far better understanding of what it takes to be successful for those with autism looking to make it in college. I would like to share these thoughts with you all, in hopes that it will give you a better idea of how to overcome certain obstacles.

The main issue that I and so many others face is the sudden leap into independent living. No longer will mom and dad be there to bail you out of your problems, or sit you down and force you to do your homework. It’s harsh, but that’s just the way the world works. Preparation BEFORE going to college is absolutely essential. Now, assuming you were diagnosed with a disability before the age of 16, you should have had an Individual Education Program (IEP) set up throughout high school. The IEP is all a part of “transition planning,” which, according to this article, is training or experience, “from hygiene to banking to job training, driver’s education, sex education, college admissions and more,” all things which are never really covered in school, but are immensely important life skills.

But it doesn’t stop there; in fact, the journey is just beginning. Once you get to school, there are plenty of resources available to you, and it’s essential that you utilize them as much as possible. At USF, there’s the Students with Disabilities Services and just about every university has something similar. These people want to help you, but it’s your responsibility to go to them, they will not come to you. If you take away any one thing from this, it’s that you need to become an effective self-advocate. Is there pressure on you to take on more of a workload than you’re comfortable with? Make sure to let the advisor know. You only have to take a few classes at a time, there’s no rush to finish college as soon as possible.

On the Autism Speaks website, there’s a large and comprehensive list of resources for post-secondary education that I suggest you take a look at. Most importantly, remember to relax and pace yourself, stress can ruin your life in college if you let it!

  • G. Sosso
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Transitioning into the Working World

Out of all the issues we try to address here at CARD, there is perhaps none more important than how can we help kids on the spectrum, who just finished, or are finishing, high school successfully transition into the adult (working) world? It can seem like a monumental task at times, even downright impossible, but it’s not! I was in the exact same position when I graduated from Lakewood Ranch High School back in 2013, and my life sort of stalled until I found CARD, and of course the Learning Academy. They helped me a lot, and hopefully I can do the same thing for anyone reading this.

According to the Autism Society via the Bureau of Labor Statistics, as of “June 2014, only 19.3 percent of people with disabilities in the U.S. were participating in the labor force – working or seeking work. Of those, 12.9 percent were unemployed; meaning only 16.8 percent of the population with disabilities was employed (By contrast, 69.3 percent of people without disabilities were in the labor force, and 65 percent of the population without disabilities was employed).” The difference between the 2 is enormous, and clearly speaks to some sort of correlation; such a gap cannot be mere coincidence. Now, to be fair, part of the blame does lie on those with the disabilities. Less than 20% of people on the spectrum were looking for work, and that is a huge part of the problem.

Many employers hear the negative stereotypes associated with workers with mental disabilities, and don’t want to take the risk of hiring them. Things like laziness, the inability to follow orders, taking longer to accomplish tasks, lack of social skills, etc. are just some of the reasons companies aren’t hiring from this demographic. And it cannot be denied that, for many young, and even full-grown adults, these things are an issue that plagues them. But, just like any other problem, it can be fixed if both the boss and employee are willing to work together and be understanding. Perhaps if more companies realized this, they could see some of the positive attributes people on the spectrum can bring; i.e. resourcefulness, creativity, unique perspectives and the ability to point out the little details others might miss.

So now we know a few of the issues, but how can we go about fixing them; i.e. making the transition? I think this article sums it up quite well, “For young adults who go directly into the employment world, it will also be critical for them to focus on their strengths and what brings them the greatest joy. They will want to explore different areas of the job market. Different work environments may help different individuals to excel. There are many opportunities for supported employment, where the employer offers supports to a worker with different challenges. Other individuals will require less support and may do better independently.” Basically, you need to find your passion, and there are many organizations that can help you out with that, including CARD!

Source: http://www.autism-society.org/what-is/facts-and-statistics/.

 

G. Sosso

Autism Moms: Things to Remember

With Mother’s Day 2016 just around the corner, I’ve been thinking a lot about my own mother and how much I appreciate her and everything she does for me. I wouldn’t be where I am today if weren’t for her, so thank you so much; I love you! Today I want to talk about some things that “autism moms” may experience or should know about. I’ve compiled this list from various sources, including the internet, my own mom, and the moms of some of my friends from the Learning Academy last year. I included a few entries that apply for high functioning autism, and some for low functioning, so as to not discriminate against either demographic. Some of these things may seem obvious, but honestly speaking, being a parent to kid(s) on the spectrum is a challenging thing, and sometimes being reminded of these things can be a huge help in keeping us grounded. So here’s my list of the most important things you will experience as an autism mom:

  1. You will become very flexible. Kids with autism can often be unpredictable and don’t always have the same thought process as neurotypical children, so you will have to learn to adapt to their behavior. Don’t expect a “one size fits all” parenting style to work very well.
  2. At the end of the day, you will have the patience of a saint. For a while, your child will test your sanity, but you will come out stronger for it in the end. My mom used to be quicker to anger, now she can take anything that comes at her.
  3. No matter where your child falls on the spectrum, you will come to be thankful for progress of any kind, be it vocal, academic or social, so much more than the average parent. You may even feel happier than they do!
  4. Like it or not, you will learn basically all there is to know about autism itself. The moms I talked to formulating this list seemed to know more about autism than some neuroscientists, which I found humorous.
  5. This one is very important: please make sure you take care of yourself occasionally. You won’t be able to take care of your kids if you’re too fatigued to do anything. Treat yourself to a night out every now and then.
  6. You may or may not go crazy at times thinking about your child’s future. Just kidding… you will absolutely go crazy! All parents worry about this, but when you have the unpredictability autism brings like I mentioned before, it can really dominate your mind at times.
  7. Above all else, you will truly learn to appreciate what you have. Kids with autism are just as wonderful as those without it, and if you just have the determination, you can make them become a success through a loving relationship.

Make sure to show your appreciation this Mother’s Day, and to all the wonderful moms out there, thank you for all you do!

gage and mom

My mother and I

  • G. Sosso

Spectrum Employment Strategies

One focus here at CARD is helping adults on the spectrum find employment at a job where they can excel. Because of this, we know the struggles that these individuals will inevitably face on this crucial path. Even the most talented, hardworking of people with ASD can struggle with some social, communication, and behavioral issues that might dissuade potential employers from looking their way. Here in this blog, I want to highlight some of the strategies people on the spectrum can utilize to make themselves more appealing in the job market. If you follow these tips, hopefully it will help you take that next step that you deserve.

 
Knowledge is power, and the most important thing you can do for yourself is to know your rights. As a person diagnosed with autism spectrum disorder, you are protected under the Americans with Disabilities Act (ADA), and the Rehabilitation Act. The ADA is, essentially, a “wide-ranging civil rights law that is intended to protect against discrimination based on disability”, while the Rehabilitation Act prohibits discrimination on the basis of disability in programs conducted by Federal agencies. I highly suggest reading this, from their official website. It explains it all in a very easy to understand manner. Knowing all this is important so you are not taken advantage of. Companies are legally obligated to give you a fair chance just like everyone else, and as long as you realize this, you will be in good legal standing if you feel discriminated against.

 

Of course, just knowing your rights doesn’t guarantee you a job by any means. You still have to deserve the job in the employer’s eyes, so here are some things you can do to show that you will be a productive member of the team. First of all, realize that autism is not some crippling disease, but in fact something that makes you unique, and gives you a distinct skillset! Many people on the spectrum are lauded for their trustworthiness, reliability, creativity and low absenteeism. Stress these things in your job interview (if they apply to you, of course). Unfortunately, many employers have a negative stereotype of workers on the spectrum, so it’s up to you to prove to them that those things aren’t true, and that you would be a valuable asset to the team. Also, and this goes for everyone, not just those on the spectrum, but following up is essential if you want the job. Be persistent. Let them know that this is important to you. It will show them your determination, and will make them believe that you will be just as hard of a worker as someone not on the spectrum.

 
Now, getting employed is only half the battle. Keeping a job can be just as difficult, if not more so. That will be the topic of my next blog; until then, I hope these strategies will help you in your road to employment.Good luck!

Visit our websites for more information about CARD or The Learning Academy

  • G. Sosso

Sesame Street’s Julia & Autism Initiative

Growing up one of my (as well as millions of others’) favorite educational programs was Sesame Street. They always managed to balance clean humor with teaching a good lesson, and they rarely talked down to their audience. Recently, I’ve learned two amazing things about the show, one of which is the topic of this blog. First, the previously anonymous man behind the blog “Autism Daddy” was revealed to work for Sesame Street! He’s even done voice work for the puppets and is the main force behind the new Sesame Street autism initiative, which I’ll get too momentarily. I highly suggest you check out Autism Daddy if you haven’t already!
As I mentioned, Sesame Street has been hard at work using their enormous platform to promote autism awareness across the world. They’ve even added a new character, Julia, to the show who has autism (her behavior implies Aspergers). Something you may notice right away is that yes, this new character is a girl, which is almost unheard of in today’s entertainment. According to the Centers for Disease Control and Prevention, 1 in 68 children are diagnosed with autism, but the number is skewed between the sexes. 1 in 42 boys are on the spectrum, while that same number for girls is only 1 in 189. That’s the main reason why whenever a character with autism is portrayed in the media, they’re almost exclusively male.
So why was Julia introduced? What mission is Sesame Street hoping to accomplish with their newest program? Well, according to PBS, “‘The initiative, Sesame Street and Autism: See Amazing in all Children,’ provides educational tools in online and printed story books and as a free downloadable app that feature “Sesame Street” characters explaining to children how to interact with friends, like Julia, who have the neuro-developmental disorder.” It sounds to me like they are definitely serious about this, and from what I’ve seen of the materials they’ve released so far, it seems to be a resounding success. The other question many people are asking is, “why did they choose a girl?” While it is true that autism is more prevalent among boys, I actually really like the move. Sherrie Westin, the VP of Sesame Street, commented on this, and I couldn’t agree more. “We made sure she was a girl namely because autism is seen so much more often in boys,” she said. “We wanted to make it clear that girls can be on the spectrum, too… We’re trying to eliminate misconceptions, and a lot of people think that only boys have autism.”
I hope Sesame Street will continue to use their influence to help more people on the spectrum, but from their track record and what I’ve seen so far, I have nothing but confidence in them. Below is a picture of Julia with Abby and Elmo.

julia

  • G. Sosso

Sources:

PBS: http://www.pbs.org/newshour/rundown/sesame-street-debuts-julia-first-character-autism/

There and Back Again: The Learning Academy

It always feels special to be able to gain a new perspective on something, and my most recent project is a perfect example of that. For those who may not know, I am a 2015 Learning Academy graduate now employed by CARD as a writer/copy-editor. It was the Learning Academy (TLA) that provided me with the skills I needed to hold down a job and cope with the real world, and now I get to repay them for all that they’ve done for me. I’m initiating a project where I’ll be tracking the progress of two current TLA students, Sean and Lizzy. I will be showcasing where they were at the beginning of the year, and how far they’ve come by the end. But that’s neither here nor there; the real focus of this blog is what a truly visceral experience it was going back into the TLA classroom, not as a wide-eyed, eager student, but as an employee, team member and someone of actual authority.

I caught my first glimpse of the new TLA class a couple months ago, during their orientation (which I remember mine like it was just yesterday!). I could see the looks of uncertainty on most of their faces, as well as a hint of cautious optimism. I can’t speak for them of course, but I can safely assume they were feeling the same torrent of emotions that I was; apprehension, hope, anticipation, joy and courage in the face of this new chapter of their lives. To be honest, when I went up to deliver my speech announcing the aforementioned project, I was very nervous. I had practiced what I wanted to say in my head a million times, and I had no problems speaking publicly last year when I was a student, but this time I had to make a good impression. I didn’t just represent myself and my own progress; I was a reflection of CARD and TLA as a whole. Luckily, I did not choke under the pressure, and received a warm reception.

My second meeting with the new class was far more low-key. In order to get a good feel for how things are going, I stopped by for the last half hour of class, and let me tell you, I can scarcely think of another time when I felt so much nostalgia. It was very tempting for me to raise my hand to answer some of the questions Megan was asking just as I had done last year, but considering I was no longer a student, I knew it would not be proper. It is a testament to Megan’s teaching ability that despite the fact that an entire year had passed, I still clearly remembered the lesson being taught, its real-world applicability, and how we used it to aid us in discovering an internship that we could succeed at.

I look forward to seeing how this year’s TLA class will fare, but from what I’ve seen thus far, I have the utmost confidence in them. And at the end of the year, when they all graduate, I’ll be watching fondly, knowing from personal experience just how special of a moment it truly is.

To learn more about the The Learning Academy at USF visit their website.

  • G. Sosso

Family Support

What is the first thing that comes to mind when we think of supports for families of children with ASD? Probably service categories: respite, in-home ABA therapy, good placements and related services on the IEP, financial assistance, assistive technology – that sort of thing.
Increasingly, families are discovering that services are not available or they are limited, due to funding cuts, lengthy waiting lists, and shortages of providers.
Finding ourselves in this situation, it is tempting to feel as though we are without any support at all, left to manage as best as we can, even though we feel our children’s entire future is at stake, and the “system” is letting us down.
We can make a decision at this point to respond any of several ways:
• We can become angry and desperate, lashing out at anyone who picks up a phone at the other end, complaining, threatening, and sometimes crying. As Dr. Phil might ask, “How’s that working for you?” Exactly;
• We can advocate for change for the sake of our children and others, by contacting local, state, and federal legislative officials or state agencies that control the funding or regulation of various services, and ask how we can help them increase the availability of services, funding, or providers in our area or state;
• We can try to become one-person autism fix-it machines, learning how to implement therapies at home, homeschooling our children, or starting our own commercial or non-profit organizations to provide services, funding, or other options.
• We can ask for help from family members, friends, co-workers, fellow worshipers, and others, to give us time to run to the store, provide after-school care, or to help implement behavioral interventions.
However we decide to handle things, there is another type of support system we can add to our toolkit that we might not have considered. This is something that might not become apparent until years down the road, after our children have finished school, ended years of after-school therapy sessions, and we have found some kind of peace with the diagnosis, acceptance of the imperfections of public and private systems that are supposed to help, and have come to accept our own strengths and limitations, for whatever successes or failures we have managed to have, as parents.
Coming from the other end of this parenting experience, I can hand back a few pointers to my younger self for where to find this hidden system of support:

Dear younger me: Look in the quiet places of your life that have nothing to do with ASD, ABA, IEP, SSI or XYZ.
But what does that mean?

It means the peace, strength and acceptance you will find years down the road doesn’t necessarily come from yelling at people on the phone, or convincing people in power to do things your way, or “winning” the biggest battle of all – “fixing” the autism. Any or all of those may or may not work out.

What do you mean by “quiet places”? Where do I look?

What happens while you are dealing with the big “A” in the room, is that your life as a human being continues to go on all around and inside you. You may find love, happiness, acceptance, and inclusion in places that aren’t even on the checklist of “supports” you are going after on behalf of your child.

1. What about the teacher who says she is happy to see your child come to school in the morning because his fantastic smile always makes her day?

2. What about that person in the prep area at the back of the taco place who sees your very unique order come up on the screen and yells, “Oh that’s gonna be my girl. How’s she doing today?”

3. What about the spiritual leader, or counselor, or other mentor, who helps you gain insight into the purpose of your life, and helps you believe in yourself?

4. What about that friend or family member who takes a special interest in your child and always asks for updates and news on the latest successes? Even after all these years, dear younger self, I still run to the computer every day to send mom photos of my child’s latest painting or tell her a story about a little breakthrough.

5. What about that moment when you revisit an interest you had pre-autism, and get back into a spiritual practice, or dance, or theater, or sport, or fiber art, or painting, or finishing a degree you left half done in order to become a super autism parent? Let’s take a sensory tour of all those places. Walk into a place of worship, or meditation center. Feel the years of devotion, prayer, silence and peace that fill the space. Walk into a dance studio. Look at the beautiful floor and the mirrors. Walk into a theater. Smell the paint and sawdust, run your hands over a few seats. Walk into a gym or locker room. Smell the sweat. Remember what it feels like to be physically exhausted and emotionally flying. Walk into a fabric or knitting store. Touch some fabric or yarn. Walk into an art store. Smell, look, explore. Go online and look at next semester’s classes. Register for the one that excites you the most. If they still use physical textbooks, walk into the bookstore and take a sniff. If not, go to the office supply store and pick up a notebook and pen. Smell that place, and see if you don’t get an extra little thrill. Whatever it was that got you excited, put yourself physically in touch with it and briefly fill your senses with that particular environment.

Then go home and try, younger me, to sit quietly for a moment or two, and forget about all the advocacy and urgency and things that aren’t going right all around you.I know there are many. Just let images float through your mind of people, moments, places and activities that make you feel happy, alive, and peaceful. Don’t put words to it. Just let it all be there for a bit.

And by the way, younger me – try, before too many more years go by, to stop saying No to all those things in number 5 because you are too busy. Say yes to something small. See if your child might join you in doing something together. Crack open that part of your life where your deepest joys await you.
For all you know, doing things that excite and fulfil you might be an inspiration to your child to develop his or her own interest or hobby.

A parent-child relationship is built on the foundation of so much more than the services and supports we usually look to when a child is diagnosed. Sometimes the most profound inner strengths are grown and nurtured in the quiet corners of our lives that go unnoticed and under-appreciated.

Go there. Find what can be loved and nurtured. Let it grow and support you in ways you can’t imagine.

  • J. MacNeill

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