Florida's First Choice for Autism Support

Posts tagged ‘Autism Acceptance’

#LiftingTheLabel

At CARD, our campaign for the 2017 Autism Awareness Month is #LiftingTheLabel. We want to show that there is so much more to these great people than their diagnosis. “Label: n. A classifying phrase or name applied to a person, especially one that is inaccurate or restrictive.” Others see an adult or child diagnosed with ASD, and their minds typically go to one of two places; either the classic “anti-social, genius savant” as portrayed in films and TV shows such as Rain Man, Mercury Rising or The Big Bang Theory, or something far less flattering. When terms like “autist” have become insults in certain corners of the internet, now more than ever we need to strive towards removing the individual from the label.

CARD and The Learning Academy have documented many noteworthy cases throughout the years, highlighting the great contributions to society made by people on the autism spectrum. TLA has a page on their website, where several former students, myself included, have written about the success they’ve encountered since attending the class, and it serves as another testament to the fact that we can be just as successful as everyone else if we put our minds to it. Some of us may have to put in a little more effort than usual, but that only makes the eventual payoff all the more sweet.

Many with autism do have certain issues with social interaction, few will deny that. However, that does not mean that we don’t want to, or are incapable of doing so. I have several great friends who mean so much to me, and they never even mention the fact that I have autism because it’s irrelevant to our friendship. For those of us who struggle with being social, we’re not doing so because we want to be alone; quite the opposite in fact. Because it’s difficult for us to reach out, we yearn for companionship perhaps more than most. If you see someone with ASD in the cafeteria, or at the workplace, who’s sitting all alone, try approaching them, and you’ll discover that they can be some of the best, most loyal friends you can have.

#LiftingTheLabel is about reaching inclusiveness in a world that wants to put a label on any and everything. Lumping entire groups of people into a single category, a single stereotype, only ever leads to ignorance and segregation. Our poster for #LiftingTheLabel proudly states, “I am a daughter, sister, athlete, student and friend,” all of which are so much more important than the autism diagnosis. This year for Autism Awareness Month, let’s make sure to start seeing everyone, autism or not, as an individual, rather than a label.

  • G. Sosso

CARD_Lift-the-Label_poster_021617

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Father’s Day

Father’s Day is coming up and I wanted to devote this blog to all the wonderful fathers out there! Earlier this month, I got to visit with local autism dad Olando Rivera, former champion kick boxer and owner of the B.A. Warrior gym here in Tampa. If you’d like to read about my visit and get some great input from a primary source, please feel free to check out here.

It’s no real secret that compared to mothers, fathers don’t receive nearly the same amount of appreciation for what they do. To be fair, there are (mostly cultural) reasons for this. With many families in America, the dad is out working most of the day while the mom stays home and raises the kids. There is no study to support the claim that women naturally have more compassion than men do, though according to this article, women express compassion more often through “nurturing and bonding behaviors,” which is advantageous when taking care of a child with autism. Like most things, however, these are just generalizations, and not always the case. There’s a national trend lately that’s seeing more and more dads act as the primary caregivers in the household. Pew Research reported in June 2014 that at least 2 million men are stay at home dads in the US alone  and that number has surely risen since then. So the men are there, and they’re not going anywhere! And this is in no way meant to marginalize the impact or importance of moms; quite the opposite in fact. The mom is the wheel that keeps the whole family spinning, and without them we’d all be lost. This is more about giving thanks to the dads out there, who are just as important and should be respected as such!

To all the moms out there: please, encourage your husband to take a more proactive role in your child’s life. If you read what Olando had to say, follow that advice. His bond with his son is so strong because he got involved, broke down that barrier that so many kids on the spectrum erect, and both father and son are stronger for it. Ultimately though, it’s up to the dads to take that big step. Olando had a great quote: “There’s nothing you can do to change your situation, other than change your situation.” This is very true. A very similar thing happened to my own dad a few years ago. Before I got my diagnosis, my relationship with him was rocky. Not terrible, but we never really connected all that well. After the diagnosis, and after seeing a family therapist, he completely turned things around; he “changed his situation.” Now he and I have a wonderful relationship and I love him dearly. Its stories like Olando’s and hopefully even my own that we’re trying to create more of here at CARD, by raising awareness leading up to Father’s Day.

This Father’s Day, remember to give your dad a big hug, maybe get him a little gift, and most importantly, let him know how much you love and appreciate him!

  • G. Sosso

Autism Awareness Month is Not Enough

As many of you might already know, April is Autism Awareness Month! All around the world, groups like CARD are doing their best to bring attention to the unique struggles people on the spectrum face on a daily basis. There’s even a special campaign every April 2nd called “Light it up Blue,” which, as the name implies, is a day to wear blue, the color that represents autism. As someone who realizes how generally underrepresented and unappreciated the ASD demographic is 11 months out of the year, I can at least be thankful there’s a month devoted to the cause of helping these people.

I’d like to include some pictures of some of the world’s famous landmarks that participate in Light it up Blue, it’s really a beautiful thing to see:

There are many others, from famous Buddhist Temples in Asia, to the Eye of London and the White House; I suggest you look them up as well!

Anyways, the thing I would like to talk about is the idea of an Autism Awareness Month itself. Now, while I said before that I do love the idea, I (as well as many others), feel that it’s not enough. According to the Autism Society, there are more than 3.5 million Americans alone with ASD, or roughly 1 in 68 births, and that number seems to be climbing constantly. Too many on the spectrum are directionless, unable to find help, don’t have the necessary life skills to thrive in the world, and these things aren’t their fault. They just need the proper guidance, and an awareness month dedicated to them is a great first step, but we need more.

Autism awareness is something that should take place all year long, not just in April. The fact of the matter is, while many people who normally don’t think too much about autism are more cognizant of it for 30 days, once May 1st rolls around, they’re back to forgetting for another 11 months. This is how many feel about other dedicated months, such as Black History month or Women’s History month. Until the day where individuals on the spectrum are fully integrated into society (or at least as well as we can be), let’s focus on making Autism Awareness Month “Autism Awareness Year.”

  • G. Sosso

Farewell to CARD

As I “retire” from CARD-USF to move on to a hundred other activities, I have been reflecting a lot lately on: how much I will miss everyone at CARD; how much I will miss USF, which has been part of my life since 1967; how much I will miss being a librarian, even if I’ve been kind of a “pretend” one for the last couple of decades; and how much I will miss keeping up on the latest research, publications, and news, though the osmosis effect of social media ensures that I won’t miss much.

Mostly, I am thinking about how much things have changed for families since my daughter was diagnosed in 1992:

  • Her original diagnosis of PDD-NOS no longer exists as a diagnosis
  • Asperger’s disorder no longer exists as a diagnosis
  • Children diagnosed with autism spectrum disorders (ASDs) in the early 90s were very likely to be placed in programs designed for children with emotional/behavioral disorders, or intellectual disabilities, but rarely in programs designed for children with ASD diagnoses. Very often, children with ASD were placed in center-based schools. We have watched education evolve from a dearth of teacher preparation and services, through developing expertise thanks to professional development efforts of school districts and organizations like CARD, through segregated settings at neighborhood schools, to a current landscape in which many more students are fully or partially included with their peers in regular education classes and activities.
  • Interventions have gone from consequence-based, punitive “treatments” to antecedent-based, positive supports that seek to make the whole environment supportive and oriented toward increased communication and prevention of challenging behaviors.
  • Community venues such as child care sites, summer camps, restaurants, movie theaters, theme parks, resorts, zoos, orchestras and museums have gone from being fairly unwelcoming environments, to seeking out training and support from CARD to open their doors and programming to customers, visitors and employees who have ASD.

One of the most beautiful advocacy movements that has emerged over the past twenty years has been the self-advocacy movement working for acceptance of all individuals with or without diagnoses. This movement has recently been represented most visibly by the author Steve Silberman, in his book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, published by Penguin Random House in 2015. Many public libraries have this book, or can get it via inter library loan if you are interested in reading it. This movement seeks to move from “awareness” to acceptance. Once individuals who have traditionally been marginalized by society develop their own voice and presence, it becomes impossible for them to continue being ignored, and changes happen quickly.

As the parent of an adult with ASD who is very challenged by social & communication issues, I will take with me into retirement a renewed sense of my daughter as an individual with unlimited potential who deserves to be accepted fully by her community, even if she needs a bit more assistance in developing her own voice. But it should be her voice – not the voice of well-meaning people thinking they are speaking for her.

Thank you CARD staff, families and friends, thank you everyone in CBCS and USF for the gifts of your friendship, wisdom, and insight. I leave here the better for having known and worked with all of you.

– Jean

jean and anna 2

The Importance of Person-First Language

You may have heard the term “person-first language” before (that’s person-first, not to be confused with first-person, a point of view); simply put, it’s a manner of speech which aims to avoid any kind of dehumanization or marginalization amongst those with disabilities. Now, there is some controversy surrounding the usage and importance of person-first language, but we here at CARD believe its use to is of the utmost importance. I’ll go more into it in this, but if you would like to read more about what person-first language is, here’s a link to a page explaining it in great detail: https://www.thearc.org/who-we-are/media-center/people-first-language.

 
First of all, what is person-first language in the context of speech and writing? Let me give you an example: instead of saying “that autistic boy,” we prefer “that boy with autism.” Autistic is an adjective; i.e. a word that describes or defines something/someone. In our opinion, a person should not be defined by their disability, be it autism or some other condition. Autism may be a part of who they are, but it is not the main aspect of their identity. When describing others, most people will say, “that girl with the long hair,” not “that long-haired girl.” The long hair is just a part of who she is, not what defines her. While not an offensive or even particularly distasteful example, the same concept applies here. If we utilize person-first language for such mundane things as hair color, then why not do the same for autism?

 
There is one other thing I would like to add, and it’s the main reason why I personally advocate the usage of person-first language, especially in regards to autism. There is a particularly nasty trend going that’s been going around, mostly on the internet, which uses “autistic” as an insult for behavior and/or actions deemed undesirable. To use a personal example, I have played many games online where I witnessed someone make a simple in-game mistake, to which many will viciously attack that person, calling them autistic just because they didn’t fit their definition of perfect. It’s even happened to me, and it’s very upsetting. For a long time, “retarded” has unfortunately been a rather prevalent insult, but now the vocabulary is expanding to include autism specifically, and it saddens me. The thought that calling someone “autistic” carries such a negative connotation is a disheartening thought, but it’s just another reason why I believe person-first language is the way to go. Being on the spectrum is nothing to be ashamed of, and you should be proud of who you are!

  • G. Sosso

 

People First pic

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

Editorial: Role of Fathers in Children with Autism

I want to highlight the importance dads play in raising a child on the spectrum. This is not meant to understate the significance of moms, but simply to give fair representation on both sides of the parenting duo. Perhaps if we in the community start giving them the recognition they deserve, more dads will be motivated to get more involved with their kids’ development. This is something we feel very strongly about, and something we feel needs more attention!

Ever since I was diagnosed with ASD at age 15, I’ve noticed the severe lack of not only father, but male involvement in the autism community as a whole. Why is that? Many researchers in recent years have noted the under representation of fathers in both psychological and sociological child-parent studies. They almost exclusively focus on the mothers, which can be seen as devaluing the paternal role. Some believe that this leads to a sort of self-fulfilling prophecy, where the dads believe they’re not as important in their children’s lives, and as such, it becomes an unfortunate reality.

So what exactly is the role of fathers of those on the spectrum? The answer is quite simple, in theory; it’s the exact same as that of the mother. Reality, however, paints quite a different picture. From what I’ve gathered (and I quite agree with this), many believe that it comes from the pre-conceived cultural notion that the mother has to be the more caring, loving and emotional parent, while the father is seen as the cool, detached disciplinarian. Many dads are also more prone to wanting their kid to be a certain way; i.e. have similar interests and careers when they grow up.

With a child on the spectrum, you can see why this would be an issue. Kids with ASD need that extra parental devotion, since it’s difficult for them in their prepubescent and adolescent lives to develop along the same lines as the general populace without said support. The truth is that mothers in our culture are simply more inclined to do so, while many fathers believe they’re not up to the task, and that they’ve “failed” somehow. The culmination of this is the majority of the time, the kid grows more attached to the mom, ultimately resulting in the widespread belief that moms are better fit to raise their child with ASD.

So now that we know what the current state of fathers is (for many, not all), what can we do to fix it? We can spread the word of course! Showcase the wonderful contributions dads have made to the community, highlight those dads who have gone above and beyond to make a difference in their child’s life, and try to persuade those who are unsure that they are just as important as their wife is.

  • G. Sosso

***Update: Shortly after this blog was posted an article was released about a study done regarding dads’ involvement.

Study: Dads’ Involvement Key For Families Affected By ASD

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