Tomorrow Is Too Long to Wait for Inclusion

Autistic: On the Outside Looking In

Steve

This post was written by a friend of mine, Steve Summers. He has given me permission to repost this here.

Do you know how it feels to be treated like an outsider? I do. I am Autistic. Some people seem to think that as a result of being Autistic, I am in my own little world and that I won’t notice if they leave me out or ignore me. They are wrong. I do notice it and I don’t like being treated as an outcast or outsider.

Do you know how it feels to be excluded? I do. When I was a kid I would hear the other kids talking about parties or events that I wasn’t invited to. As an adult, I still have people around me doing the same thing. They talk about how they had some fun, did some event or get together that I was never invited to do. Not too long ago someone was talking about how they took an acquaintance out on their boat on a fishing trip and even though I have known them much longer, I have never been invited to go with them. Is it because I am Autistic? Do they care that I feel ignored and excluded?

Do you know how it feels when someone offers to do something nice for you and then they don’t ever get around to doing it? I do. I know because that happens to me.

Do you know how it feels to be second guessing yourself even for seemingly small issues? I do. For example, I recently wished someone a happy birthday on their Facebook timeline. When I went back to their timeline a day or two later my greeting was hidden away. Why would they do that? Is it because they don’t want their friends see that they have an Autistic friend? Are they ashamed to be my friend? I don’t know, but, it seems that way to me.

Do you know how it feels to have people simply stop contacting you? I do. I sometimes have friends and acquaintances “fade away” from interacting with me without any explanations. They simply stop talking, calling, commenting or posting. When asked about it they say nothing is wrong, but they don’t change anything.

Do you know how it feels to have people get offended over things that you don’t have any control over? I do. For example, I have some mild issues with face blindness (prosopagnosia) which is somewhat common among people with autism spectrum conditions. I sometimes have difficulties with recognizing people if they are in an unexpected place or in a place where I haven’t run into them before. People expect you to say, “Hello” and they get offended if you walk past them without saying anything. Along with face blindness is a difficulty in remembering names. I prefer to simply say “Good morning” or “Hello” without including a person’s name because I don’t want to chance saying the wrong name. Some people insist on using names and will be offended if you rarely say their name. They don’t understand that I don’t mean any offence by not recognizing them or forgetting their name. I don’t do it on purpose. Please, don’t be offended if I seem like I don’t know you. Please, if you say something like, “Hello” and if I look confused, add, “I am _____ from _____ we met at the _____.”

Some other things Autistic people sometimes do may cause inadvertent offense to the ignorant. Here is a partial list of some Autistic characteristics that that may confuse the ignorant and lead to rejection: 1. Lack of eye contact. 2. Poor social skills. 3. Literal thinking. 4. Fidgeting or stimming.

So why do some people who are part of the neuromajority exclude Autistic people? Most likely because they are ignorant of the facts of Autism and due to their ignorance they behave as neurobigots. They may exhibit either conscious or sub-conscious neurobigotry, but, the results are the same, exclusion of the Autistic. People who are ignorant tend to avoid and shun people who are “different” or that they don’t understand. If people don’t educate themselves on what to expect from the Autistic, they may try to avoid us. Ignorance really does hurt us. Being different is not wrong. We shouldn’t be excluded for our differences.

Try to put yourself in my shoes and see how it feels to be treated like someone who is an outsider. Try to understand that I do notice these things and I don’t like being ignored and excluded. Please be considerate and inclusive. Thank you.

———

Read more about face blindness here: http://autism.about.com/od/SymptomsofAutism/f/What-Is-Face-Blindness-Prosopagnosia-In-Autism.htm

I was diagnosed with Asperger Syndrome (part of the Autism Spectrum) as an adult. I was diagnosed following my 11-year-old son’s diagnosis with Aspergers. I am happy to have my diagnosis. It is like a light was turned on that illuminated my entire life in a new way. Now I understand why I never really ‘fit in.’ It is like having a huge weight lifted off of my shoulders to have my diagnosis.
I don’t feel that people should make divisions between parts of the Autism Spectrum. I am Autistic and I want to work to make the world a better, more understanding and accepting place for all Autistic people. We need to work together for the benefit of all on the Autism Spectrum.

A Place for Parents: Autistics and Allies

Sticker of two people holding hands.

By Larkin Taylor-Parker

Disagreements between stakeholders of various kinds are fairly common in the disability community, but conflict plagues autism discourse. The place of parents is particularly contentious. As I prepared for this post, I glanced around the Internet for what had already been said. There are too many existing attempts to fix this with a blog post, or, worse, one that oversimplifies the conflict or makes a straw man of one side. I decided this would not be another iteration of an endemic, useless thing. As I read others’ thoughts on the subject, I happened on a year-old article called Who Should Lead the Autism Rights Movement? Instantly, I knew how to articulate the problem and solution.

The answer to that question is obvious: people whose lives are most shaped by society’s decisions on what to do with autistic people deserve the final say. Social change that undermines oppression has never been ally-led. Agency as charitable donation is a contradiction in terms. We must take it for ourselves, not wait until others deign to bestow it. The thrust of every argument I have seen against our leadership is that we are too disabled to have a say in our future. I see this sentiment often. It comes couched in sympathy, recommended for convenience’s sake, and presented in the tired terminology of a moldy eugenics textbook in my vintage and antiquarian collection. I have never seen these claims hold up to scrutiny. The arguments are full of transparent fallacies. Besides, Autistics and other people with disabilities are challenging notions of our incapacity in numbers hard to dismiss as anecdotal evidence. Given a measure of control over our lives, we usually improve them. We will always know more about how to do that than allistic* people. We know our priorities, experiences, needs.

Parents may not be able to set the agenda, but they have a natural role in neurodiversity and disability rights efforts. It is partly restraint. They can be quiet in our safe spaces and encourage others to do likewise. They can stop calling anyone capable of typing insufficiently disabled to have valid opinions. They can stop speaking for and talking over us. However, not everything we need from them is passivity. There are active roles no one could better fulfill.

The media asks them about autism before it does us. Parents have the opportunity to amplify our voices where they would otherwise be ignored, redirect questions, challenge purely negative perceptions. Parents can raise money for worthy causes and organizations. The silver lining of the Autism Speaks problem is that many learned fundraising. Parents can raise assertive autistic children with a healthy sense of self-worth. They can bring up kids who carve a place for themselves in the world and understand their right to be here. Parents can stand with autistic children and adults as we demand a fair chance at rich, full, dignified lives.

As parents work to ensure they are on our side, autistics should help. We must find a healthy middle ground between the extremes of ignoring ableism and writing decent people off for one ignorant word. This is more than being humane. It is pragmatism. We need allies more than most groups. At just over one percent of the population, we will never have the numbers to go it alone.

*non-autistic

Editor’s Note: This post was originally published in 2012 and has been updated with a new author bio as well as a new featured image. 

Larkin Taylor-Parker is a second-year law student at the University of Georgia. She is interested in disability rights, the experiences of young professionals from historically marginalized groups, and fixing internet culture. She is also an avid recreational tuba player.

Striving for Community as a God-Loving Aspie

man looking up towards heaven thinking about god

By Timotheus “Pharaoh” Gordon

Being autistic and striving to be a Christian is very rigorous at times, especially if there are little resources or examples for such community.

I’ve been practicing Christianity for about a year and two months. It may have been a difficult year of struggles; heck I still have to work on (e.g., having MY OWN convictions that are based on the Bible, not solely word-of-mouth). But I’m growing more convinced that through the power of the Trinity, even autistic people can change the world as Jesus did.

I love studying the bible, praying for people, helping out people, going to mission trips (to take pictures of those experiences), and hanging out.  Sometimes, I would blog about my faith on my website.

Yet, I don’t really feel like a member of the church at times. I interact with people, but not as well in huge crowds (so many people and too noisy). It seems like some would see this as not wanting to fellowship when it’s only part of my autism. I feel like very few of my peers understand my challenges with fellowshipping. I also struggle with emotional meanings behind certain passages.

I’m scared even more when it appears that I’m alone in the fight to stick with Christianity as an autistic person.  I met two boys in a Birmingham church who are autistic, but I’ve yet to find autistic adults who are Christian. How can I be an autistic Christian if there is lack of adequate examples of such persons out there?

I believe that first step in seeing more autistic Christians (especially those who are living independently and are verbal) is to provide resources that could help them grow in the faith. The catch is that resources have to come from someone or an entity who fully understands autistic Christians’ hardships in the world. Resources could even come from a person in the autistic spectrum who been the faith for a long time (e.g., at least 2 years). Providing spiritual guidance from the verbal, independent autistic’s point of view is more beneficial than turning to a place or someone with limited/stereotypical knowledge of the condition.

Meanwhile, more Christians that are autistic should network with each other and share their testimonies to non-autistic Christians. That will inspire many people and convince of how God could work through anyone.

With those, I would hope to see news of more autistic Christians making a difference in people’s lives and less of parent’s woes with raising an autistic child in a Christian household.

(sidebar) Links related to Autistic Christians:

Autism Society (Religion and Autism): http://www.autism-society.org/living-with-autism/family-issues/religion-and-autism.html

Books and Resources on Religion, Spirituality, and Moral Development: http://www.neurodiversity.com/religion.html

Christianity and Autism Forum: http://www.aspiesforfreedom.com/showthread.php?tid=21631

James Tuttle (autism advocate, political advocate, and commentator on spiritual issues): https://www.facebook.com/pages/James-Tuttle/23053891623

Spectrum Ministries: http://www.facebook.com/pages/Spectrum-Ministires

Photo Credit: Carlos Solares/Flickr

Editor’s Note: This post was originally published in 2012 and has been edited for clarity, has a new author bio and has as a new featured image.

Timotheus GordonBorn and raised on the south side of Chicago, Timotheus “Pharaoh” Gordon has loved the power of writing since 3rd grade when he copied love poems and read history literature in his free time. He got married to poetry in 2003 after turning in a humorous poem on his daily routine for a homework assignment. Writing, especially poetry, also helped him develop a voice as an African-American male with autism.
He is a freelance writer and blogger specializing in autism acceptance, social commentary, sports, cosplay, and comic/anime conventions. He is published in online publications such as Football.com, Creative Loafing Atlanta, and Yahoo Contributor Network. In addition, he takes event pictures at anime/comic conventions, rallies, college events, class reunions, 5K races, and church functions. Along with those two professions,  am currently an independent marketing representative, where I utilize social media and word-of-mouth to provide essential productions and show people how they can gain financial independence. Connect with him on Twitter @TimotheusGordon or his other social media outlets.

Five of Our Best Posts on Autism Acceptance

AutismAcceptance

While autism acceptance or at the very least autism awareness receives the spotlight in April, we at Think Inclusive promote autism acceptance year round. Over the past few years we proudly published pieces geared to help our readers better understand autism. For a limited time we open the Think Inclusive archives to the general public so everyone can read or reread our best autism content. Enjoy!

Why Autism Speaks Hurts Us” by Amy Sequenzia (Guest Blogger)

Leaders in a movement essentially shape attitudes towards the given issue, an occurrence guest blogger Amy Sequenzia puts into context regarding Autism Speaks and autism advocacy. Autism Speaks’ negative view on the disability influenced Amy to see her autism negatively. However, through life experiences she eventually abandoned those notions to recognize autism as an important part to her personality. In “Why Autism Speaks Hurts Us” Amy highlights the dangers Autism Speaks casts.

My Decision to Homeschool My Son with Autism” by Allison Trotter (Guest Blogger)

In her Think Inclusive guest post Allison Trotter addresses autism and education. Specifically, Allison discusses why she decided to homeschool her autistic son Jackson. Using an analogy she demonstrates a student with autism can learn in the large school setting but successful placement requires one critical element, an element Jackson’s school unfortunately lacked.

The Best Argument Against Autism Speaks: A Special Educator’s Perspective” by Tim Villegas

If guest blogger Amy Sequenzia’s previously highlighted post didn’t remedy your curiosity about why so many call foul on Autism Speaks, Think Inclusive founder Tim Villegas will. Tim shares his passionate, thorough, and compelling argument against Autism Speaks, even using the organization’s own words to identify their missteps. As Tim’s title suggests he offers a special educator’s perspective on the situation.

Passing: How to Play Normal” by Larkin Taylor-Parker (Guest Blogger)

After reading guest blogger Larkin Taylor-Parker’s post you may become more self-conscious over what you say and around whom. Larkin’s Asperger’s Syndrome diagnosis lands her on the autism spectrum. Yet due to Larkin’s parents heavily criticizing her social behavior as a child she learned to “play normal,” faking behaviors to gain acceptance from us neurotypical people. Judging by Larkin’s last paragraph that acceptance appears not the Holy Grail we on the outside might envision.

Autistic: On the Outside Looking In” by Steve Summers (Guest Blogger)

Autistic people who don’t adapt to our neurotypical way will probably experience social exclusion, the topic guest blogger Steve Summers addresses in his post. Steve expresses the hurt and confusion he feels encountering exclusion. These instances range from someone hiding a “Happy Birthday” Facebook post he gave to not getting invited to parties. All in all Steve’s insights stands a great conversation starter about autism and socializing.

Photo Credit: Philippa Willitts

11 Insightful Tips for Parents of ASD Adults for Getting the Most Out of Vocational Service Providers

11 Tips On Getting The Most From Vocational Service Providers

A lot of what’s in place to support young adults on the autism spectrum entering the work place kind of sucks.

At least, that’s been my opinion in the ten years I’ve coached my son, who has Asperger’s Syndrome, through a maze of social service agencies in his search for full time, meaningful employment. When we started in 2005, I had no reason to expect anything but the very best from these agencies and what they had to offer. My son, then eighteen years old and a high school graduate, wanted a job rather than more time in school.

So, with college off the table, we followed the advice of his guidance counselor by scheduling an appointment with what was then called Vocational and Educational Services for Individuals with Disabilities (VISID)—New York state’s referral organization to other social service agencies.

It was an okay experience. Until it wasn’t.

As I remember, VISID did its job this first time around. They assigned a caseworker to my son, and after several meetings, she sent him off with a list of three agencies and instructions to “pick the one that resonates with you.” What happened next wasn’t VISID’s fault. In hindsight, I blame my naive assumption that agencies would never deliberately lie to their clients. Wouldn’t you think that any agency about to go out of business would be upfront about that? They could say something as simple as, “We’d really like to work with you. Unfortunately, we can’t take on new clients at this time.” Easy, right?

I guess the agency we chose didn’t like “easy.” Less than three months after they helped my son get a job, they’d gone belly up. Not a job coach, supervisor or agency director in sight. And, that job? It was a nightmare for someone on the autism spectrum. Not understanding what our options were (because no one had explained to us how adult vocational service agencies work), my husband and I took over. Together, we guided our son through what he needed to do to get himself out of that minefield and into a better job.

Over the next ten years, our son cobbled together a series of part time jobs while chipping away at his goal of getting a full time job. Despite a fair degree of independence, we knew that he really needed professional support to help with his job performance.

If only we could find it.

When we discovered that our son was still eligible for vocational support, we decided to give the agency route another try. Maybe the second time around our experience would be better.

We thought it might be better because this time around, not only were we older and wiser, we knew what questions we wanted to ask; we came with our hard-earned arsenal of “stuff” to put on the table. Most importantly, my son had a few specific ideas about the kind of job he wanted and the type of company where he’d like to work. We also brought written agendas to preliminary meetings—those meetings you have while you’re interviewing agencies to decide which one you’d like to work with. Yet another difference this time around was the alarming number of young adults on the autism spectrum who were transitioning (and continue to do so) from high school into the work place.

In 2014, Dr. Paul T Shattuck, an associate professor in the A,J, Drexel Autism Institute and Drexel University School of Public Heath, noted that approximately 50,000 young people on the autism spectrum would turn eighteen years of age. Shattuck co-authored two studies published in the Journal of the American Academy of Child & Adolescent Psychiatry that examined employment and independent living among young autistic adults. Over the next five to ten years, I believe this segment of the population has the potential to bury already-overburdened vocational support service agencies. That’s scary if you’re worried about just one son or daughter who will need the services vocational service agencies provide. If you’re that parent, I’ve got something that may help with that.

These eleven tips are designed to demystify some of the job search when you decide to partner with an agency like the ones I describe (if you live in New York state). You’ll have to let me know if they’re effective for navigating similar agencies in other states.

1. Plan ahead

Before you meet with an agency, do as much as you can to lay the foundation for a good job search: If some of this took place while your child was still in school, you’ll already have a starting point. Any prior work experience, internships, volunteer opportunities, skills/talents and interests can be included on a resume. Have copies of that resume in hand.

Personalize your child’s Asperger’s Syndrome diagnosis. In addition to a resume, include a written summary of the features, strengths and limitations of how Asperger’s affects your son or daughter’s learning style and work habits. This doesn’t have to be fancy. The first one I created was handwritten. Here’s a template of a partially completed summary sheet:

What the Agency Needs to Know:
What the Employer Needs to know:
(Name) experiences auditory processing delays. Voices don’t coincide w/the sound source. A written list of tasks is better than verbal instructions for (Name)
When (Name) listens, the speaker’s words reach his ears half a second after speaker’s lips move. (Name) will be more productive reporting to one
supervisor
(Name) might need time to process what he hears. If you’re not sure (Name) understands what you’ve just said, you can ask him to repeat your words back to you

It’s important to note that this sheet is not for employers. It can be a conversational tool for the agency employee to be used when she is talking with the employer. (Once my son was hired, this sheet was a great “talking piece” that his job developer referred to when she discussed reasonable job accommodations with his employer.)

Give some thought to the kind of “company culture” that might be a good fit for your child. As an example: lots of noise, constant interruptions and having multiple supervisors to report to on any given day creates an overwhelming, unpredictable work environment for my son.

Research this carefully. Talk about it at the meeting.

2. Have an agenda for that first meeting

Don’t make this meeting all about your child. In fact, once the introductions are complete, take a few minutes to find out exactly what this caseworker’s job entails. The more you understand what a typical day looks like for her, the better you can support her as she works with your son.

Open that conversation by asking her to give you a brief rundown of her work day. Does she stay in her office conducting interviews, managing her caseload, attending meetings? Are there days when she’s out in the field? If your family needs to reach her, does she prefer email or phone calls? Does she text message?

What’s her turn-around time for replies? If your child sends an email thinking that he’ll get a reply within 15-20 minutes and her turn-around time is 24-28 hours, that’s critical information.

What exactly will she be doing on the client’s behalf? Ask her. The more clarity you have on the specific things she’ll be doing, the smoother your relationships will be. (I always knew that I was asking both for myself and for my son. He doesn’t take the initiative and when he didn’t get clarity there were problems later on.)

If you’re not comfortable asking her how large her case file is, you might want to ask the agency director… before the first meeting. Sadly, overburdened caseworkers are the rule, not the exception. One of my son’s caseworkers handled 150 clients. A young man we know had a caseworker with over 250 clients. Others may have less. You need to know the ratio of number of clients per caseworker.

Don’t ever settle for shoddy, lazy performance. I learned (too late) the importance of asking a caseworker if he’d taken the time to read my son’s file before sitting down with us.

Find out the difference between a “job developer” and a “job coach.” Is there any overlap between these two roles? (Once your child is working, does the job developer fade away or is he someone who continues to work alongside the assigned job coach?)

Ask what the agency guidelines are on “disclosure.” (Disclosure simply means that someone on the autism spectrum shares their diagnosis with someone else, in this case, with an employer.) Know that the agency might have its own opinion. Insist that they support your son or daughter’s feelings about this.

I asked: “Have you ever helped a client write a “script” to disclose the fact that he’s on the spectrum as part of the interview process? No? Are you open to using the ones we’ve written?”

Always make sure you have names and contact information for supervisors, managers and agency directors. Build relationships with these folks. Going forward, you might need to reach out to all of them.

Temple's Mother3. Insist on a working partnership

Despite my son’s ten-year job history, he’s only just learning how to self-advocate. There are conversations where he clearly benefits from having a communications facilitator. Many times, that role is mine.

It’s important to explain this to caseworkers if you have the same agreement with your child.

Both my husband and I have our son’s permission to participate in any and all medical, financial, legal and other matters that HIPAA typically protects when someone is over the age of eighteen.

This means that I can contact his caseworker on my son’s behalf. If this is true for you, make sure you bring this up during those first meetings with agencies—there’s a form your adult child will need to sign waiving his HIPAA privacy.

When your child gets a job, he or she is assigned a job coach. Don’t stop being the professional communicator for your child when this happens. I’m more than happy to reinforce my son’s relationship with this individual as long as it is beneficial to my son.

Some agencies prefer that you work with someone other than the job coach when job-related issues arise. That’s why it’s important to know the chain of communication so that you can work productively with staff.

4. Conversational red flags to watch for

Caseworker says: “That’s too competitive a field for your son.”

Don’t ever let someone dismiss a job or an industry that has captured your child’s heart. There is almost always a way to figure this out when people are willing to think outside the box if what the client wants to do is within his or her reach.

Caseworker says: “… but we’ve always done it this way.”

My son brought four pages of interview questions home after meeting with his caseworker. He told me he thought the questions were “old-fashioned.”

Reading them over, I found myself agreeing with him. Not only were they twenty years in the past, they were questions more suited to a corporate environment, not the small to mid-size company environment that my son wanted.

More to the point, none of those questions fit job descriptions in my son’s areas of interest—which didn’t deter the caseworker. She insisted on using all of these questions as preparation for upcoming interviews.

Caseworker says: “I’m going to tell him that Craigslist is dangerous.”

I said: “If you do that, you’ll jeopardize your own relationship with him. Did you click on the link in that email I sent to you— to see what company he’s interviewing with?”

Caseworker’s reply: “No, I haven’t done that.”

This conversation took place shortly after this caseworker found out that my son had just been hired by one of the more prominent property management companies in our city.

All on his own initiative.

By answering an ad on Craigslist.

Rather than mentally smacking this woman for her prejudices about Craigslist, I reminded her that not every posting on this platform is dangerous. Reputable companies use it, and in my son’s case, it had paid off.

5. Sometimes, you have to coach the coach

My son and I learned a lot in the ten years that he’d been working. That information is too valuable to disregard. For example, we know how important it is to keep a positive relationship with the people who work for the agencies that are supporting him.

I took on that coaching role when I explained why my son wanted to disclose his Asperger’s during job interviews. We got push back from the supervisor and the job developer as they told us that they’d “always done it this way…” They meant that they did not disclose that fact until after an individual was hired.

I didn’t argue because I knew that when my son was interviewing, he could handle this. But wouldn’t it have been great if the agency had been on board with this?

As for those “old-fashioned” interview questions? They were never asked during the two interviews my son had. And he did just fine.

Talking with a potential employer about being on the spectrum? Using several conversational starters from his personalized Asperger’s chart, my son brought this up during the second half of a job interview.

And got hired.

Not because of the Asperger’s.

He got the job because he was an ideal candidate for the open position. The Asperger’s conversation took place after my son’s qualifications for the job had been discussed.

Disclosure is never a one-size-fits-all decision. Conversations about how to handle this take place in autism support groups among parents and young adults who are already working or seeking employment. If you haven’t already, join one. Listen carefully.

6. What happens if there’s a personality clash?

Even with the best of intentions, it is possible that a client-caseworker relationship deteriorates to the point of being unproductive. Don’t let this fester. Contact that caseworker’s supervisor and try to come up with a better arrangement.

It’s a good idea to discuss this possibility at that first meeting. You need to know what the repercussions are if your child feels that he or she has reached an impasse with his caseworker.

The goal is to always keep moving toward the job goal. Wallowing in dashed expectations wastes time.

7. The importance of emails

Go back to that very first meeting with the caseworker and the list of questions you asked. Did you remember to ask her how many emails she has to sort through each day?

If your child’s email (or yours) is one of 200 or more in the caseworker’s inbox, there’s going to be some lag time before you get a reply. Getting an answer ASAP might not be realistic. So, know that going in and be patient.

Emails can be perfect communication tools for adults with Asperger’s who might not excel at spontaneous communication. This is also true with text messaging.

8. Text messaging is a game changer

Text messaging is fast, “in the moment” (which can be critical for someone with Asperger’s), and everybody does it. Except for my son’s caseworkers.

Ask if they text. Don’t be surprised if they say no.

9. Know what’s trending

Does the agency embrace diversity by hiring staff who are intellectually and developmentally disabled?

Disclosure’s a funny thing—they could have someone on board who’s on the autism spectrum and not know it. But, given the fact that inclusion is one of the buzz words trending in two national public awareness campaigns to promote employment opportunities for adults with disabilities, it’s clear that change is imminent.

It’s early days for these initiatives. October 2014 marked public announcements by both groups.

Anthony K. Shriver, founder and chairman of Best Buddies International, and Carlos Slim Helu, a billionaire industrialist, officially launched the “I’m In To Hire” campaign on October 7, 2014.

Their goal? Nothing short of a global campaign to get one million unemployed individuals with intellectual and developmental disabilities into the workforce… in the next ten years.

Right on their heels, on October 29, 2014, Autism Speaks announced that, in collaboration with the Kessler Foundation, May and Stanley Smith Charitable Trust, New York Collaborates for Autism and Poses Family Foundation, they have “…collectively committed almost $7.5 million to support groundbreaking work in disability and inclusion in employment in 2014 and 2015.”  

Their purpose is to expand employment opportunities for individuals with disabilities and to speed up the adoption of disability inclusion initiatives.

So, yes, change is coming, but perhaps not as quickly as we’d like.

This is why it’s important to find out if the agency you work with embraces inclusion right now. If they do, then their company culture reflects what’s coming; they will be more attuned to job-related issues that could be problematic for your child.

10. Support your son or daughter’s independent job search

A wise friend once told me that “the success of your business should never depend on just one person.” She was talking about direct sales but her advice was a constant whisper in my heart in the years following my son’s high school graduation.

Know that the success of your child’s search for a great job should never depend on any one person or on any one agency.

You have, within your reach, a circle of family, friends and business colleagues ready to help your son or daughter. In many respects, all of the time-honored elements of looking for a job still work. Technology shortens the process. Networking drives the journey.

Pick up the phone. Call people you know. If your child wants to interview with a company, find someone who knows someone who works there. The goal is to create introductions so that your job seeker never cold calls a company.

Create a mission statement and a transition team. Here’s what we came up with for my son: “… to find an entry level position with a small to mid-sized property management company with family values.”

I inventoried over twenty years of my own job history to find mentors for my son, places where he could volunteer, and people who would help him write a resume or personally introduce him to potential employers.

Not wanting to discount anything, we went back to agency support. However, the ground work we did prior to making that decision resulted in two job offers that my son got because of networking and his own initiative.

11. It’s okay to share, but never surrender your role

We were twenty minutes into that introductory meeting when one of the agency staff members leaned across the table, smiled, and said, “It’s really okay for you to relax and just be the mom.”

“Yes,” added her department supervisor, “We’re the professionals. Let us handle this.”

I’m sure they meant well and I really wanted to believe them.

After almost thirty years of parenting, I was so tempted to give it up. I might have if I hadn’t spent ten years as my son’s job coach/employment strategist.

I put all of these eleven tips to work during the next 45 minutes. Midway through listening to their answers to all my questions, I realized that relinquishing my role wasn’t an option.

Don’t let it be an option for you either.

From the moment our children are born, we are more than “just moms” and “just dads.” We are skilled negotiators who put together medical, educational and social support systems for our kids. We are self-taught experts on many autism spectrum related topics.

We are consensus builders, teachers, and staunch advocates, relentless about finding programs to benefit our kids. If we can’t find ‘em, we create them.

We think outside the box.

We push the envelope.

By the time our children are ready to graduate from high school prepared to take on the world, we are seasoned professionals.

The only difference between you and me is that my son graduated before yours. I’ve had a lot of time to figure some things out—some of which worked really well. Like these eleven tips.

Pick them up.

Let them work for you.

You can pick up a copy of Kathy Hensel Porter’s 10 page FREE REPORT with tips about how to write job related explaining scripts right here.

Photo Credit: Chris/Flickr

Until All Means All: Redefining Inclusion

Until All Means All: Redefining Inclusion

By Lydia Wayman

If you have a moment, do a search for “inclusion in education.”  When I did the same search, I quickly discovered that the definitions fell into two categories: those that focused on the inclusion of disabled students (see why I use identify-first language here) among their non-disabled peers and those that took the broader perspective of educating all students in the same environment in meaningful ways.  The difference might not seem important.  After all, if a student has no diagnosis or learning issues, why would he or she even have a need for inclusion?

I was very strong in academics.  I could read by age three, and I finished the 4th grade math curriculum in the second week of kindergarten.  I was the youngest student in my district’s history to enter the gifted program, where IQ tests showed my verbal IQ to be near the test ceiling. In high school, I combined my junior and senior years and went to college at 17.  But… that’s only one side of the story.

As early as second grade, I had issues with teachers.  In third grade, I was bored and asked to be taught from advanced curriculum, but the IEP team determined that I was “lazy” and “not completing work” as it was and thus would not be permitted to do advanced work.  In the report, my state scores (99th and 98th percentiles) and IQ score are on the same page as the comment from one teacher that “Lydia is an average learner,” which shows the bias and the fact that I butted heads with that teacher. In ninth grade, when I broke down in the orchestra room, my teacher said that it was no wonder other kids were mean to me, and that if I would just be “a little less maniacal,” that they wouldn’t be so cruel.  At an elite, private school as an undergrad, several my professors said I was rude and disrespectful.  I asked my parents how I could possibly disrespectful… didn’t my complete panic and shame over the fact that I even made the professors feel that way show that I respected them very much?

I was diagnosed with Asperger’s Syndrome at age 21, in my final semester of college.  Things got significantly worse for several years following my diagnosis, including a failure to succeed under the social and sensory demands of student teaching.  I left my placement after three weeks, but I was offered an alternative assignment and still graduated, though without a teaching license.

I am now one term from completing my M.F.A. in English and creative writing.  My graduate experience has been altogether different than my lifelong struggle as an academically-capable but often very unaccepted student.   I finally realized that my graduate program sees me as an individual… they value my strengths, but they don’t discount my weaknesses.  I am registered with Disability Services for medical issues in order to substantiate any need for absences, which I have never needed to use, but I am not registered under any needs related to autism.  As each term begins, I introduce myself, and since we all discuss our backgrounds and current work, it is easy to drop the hint, since I say that I’m an “autistic advocate.”  My professors have been completely positive about this and I have yet to experience a negative interaction with any of them.

I did a mentoring course where I assisted with an undergraduate composition class last term, and when I told my mentor that I am autistic, his response was that he was excited to have a different perspective in his classroom.  I excelled in the course, which left me feeling a bit redeemed from my undergraduate experience in student teaching.  My success came from three things: five years of growing up, an academic environment that plays to my strengths in writing (since it is online), and a school that values every student and strikes the balance between maintaining high standards while understanding individual needs.

I am extremely grateful to have found the school and program.  I believe in the school’s mission and support of all students to the point that my aspiration is to go on to teach in the school’s online undergraduate program.  But I am left wondering… why did it take until graduate school to find this environment?

A definition of inclusion that only focuses on disabled students is problematic because the reality is that every single student, no matter how bright, has weaknesses.  Those weaknesses may have nothing to do with academics, but no person alive is a uniform set of strengths.  When I was young, I was frequently (oh, how frequently) accused of being “smart enough to know better” or “too intelligent to make this (often social) mistake.”  Teachers in elementary, middle, high school, and even college classrooms were so focused on my academic abilities that they were completely blind to the fact that my very real disabilities were affecting me in important ways—socially, emotionally, and even physically.

There are certainly different ways to attack this problem.  We can educate teachers about autism and ADHD and learning disabilities and every other possible disability that an unidentified child might have.  We can also make teachers in gifted programs aware of disabilities to counteract the “not our kids!” attitude.  We can spread the word on college campuses and encourage awareness campaigns so that young adults are aware that some people get to college-age and beyond without being identified.  But, whenever possible, I like to approach problems from a broad enough perspective so as to help as many people as possible… so, I think the simplest solution (or one part of a solution) is to change the way we talk about inclusion.

It’s about students in special programs, and students who work with the aid of a paraprofessional, and those who are quiet but work hard, and students who act out, and students who seem to be academically brilliant but socially clueless, and those who excel in every way and seem to have no weaknesses at all….

In fact, that last student does not exist.  None of us are uniformly strong, and when teachers see a student as “perfectly capable” but then blame an 8-year-old for her own struggles, it helps no one… least of all the child.

Inclusion isn’t about “those” kids or “these” kids… it’s about understanding that intelligence takes many forms and finding ways to accept every one of them in the classroom.  It’s about reaching, teaching, and including all kids.

Photo Credit: NASA/Flickr

Lydia WaymanLydia Wayman is an autistic young adult and advocate. She has her B.S. in Elementary Education and will finish her MFA in English and Creative Writing in November of 2014. Lydia combines professional knowledge with personal experience to reach parents and professionals through her blog, books, articles, and speaking engagements. She also works part-time at a nonprofit autism resource center and enjoys mentoring girls on the spectrum. Her message is that people are awesome not despite their differences but precisely because of them.

3 Ways Talking to Autistic Adults Can Make You a Better Teacher

Experts Everywhere

By Michael Scott Monje Jr.

We aren’t necessarily trained educators (although some of us are), but we have an advantage over people who are: we understand what it’s like to be on the receiving end of accommodations and special education. Here’s what listening to our experiences can do for you as a teacher:

3. You’ll be forced to confront your assumptions about your students

It’s easy to look at someone like me and to mentally apply a label. Asperger’s, you might think. High-functioning. Verbal.

The problem with this kind of mental labeling is that it only really speaks to your perception of me now, as an adult who is closing in on middle age. You don’t know what I was like when I was five or ten or fifteen. You don’t know whether I could vocalize during my elementary school years or not. You apply those labels based on what you see of me now, not based on my history. This kind of shortcut in thinking is understandable and human, but it is also an error. It assumes that people are static and that certain kinds of impairment are insurmountable.

Given your profession and your position within that profession, that’s not a mistake you can afford to make.

If you listen and you hear about the varieties of our experience, you’ll start to really appreciate this in a new way. Not only will you learn that there are many of us who had speech delays well into adulthood, you’ll start to hear about the delays and problems we still have.

For example, I still have times when I find it impossible to speak. All of my developmental milestones for speech were “on time” when I was a kid, but under certain circumstances, I just can’t talk. The truly unfortunate thing is, losing my voice is more common when I’m being asked to do something that I don’t truly consent to or when I feel like my rights are being stepped on. This means that it’s incredibly difficult for me to actually say what I want or need during the times that it is most important that I be able to.

This access issue goes away if I’m allowed to simply type instead of talking, but most people do not believe that there is such a huge gap between what I’m capable of saying and what I’m capable of writing, because they see my ability to adhere to certain social roles and pre-defined interactions (such as etiquette-based exchanges) and they assume that the things I’ve been taught to say reflect the things that are actually going through my mind. The very real schism between what I am capable of navigating and what I am capable of fully participating in has been the defining feature of my adult life, and it is very much caused by the same kind of shortcut in thinking that leads to autism parents and educators quietly applying function labels when they see that I can talk.

I’m not really a special case, either. There are several other bloggers out there who discuss (much more often than I do) the varieties of ways that they communicate under stressful or uncertain circumstances.

We are like the children you work with. We are like all of them, just not all at once. My ability to put on a social performance that is comfortable for you doesn’t change that. Instead of looking at our more-or-less normative performances as adults and seeing that we have “overcome” or that we are “higher functioning” than you expected, consider the idea that we are capable of translating. It’s hard, and we’re not infallible—all communication involves inference and inductive reasoning, and we can make mistakes—but we have an advantage. We share a frame of reference with your students that most of you don’t share.

The fact is that a lot of child development theory is based on conjecture and observed behavior under very limited circumstances. When children are developing outside of the projections of theory, then theory really just starts to be about one of two things: Either it becomes a mess of guessing and hoping that you’ve guessed right, or it becomes a blueprint for shaping a certain kind of behavior instead of being a blueprint for understanding the actual experiences that people have.

Both of those choices are awful when there is a third option available: Gathering more information from people who have experienced an alternative developmental path and creating new theory.

2. You’ll be put in touch with cultural resources that you might not otherwise be able to access

One of the first questions I’m asked whenever I meet a new parent in the community or a new educator looking for resources is whether or not I’m the only one doing this kind of work right now. It just amazes me. Not because I don’t understand the feeling, but because I still do, even now.

I’ve been presenting my writing publicly for about 3 years, and when I started, I thought that all the blogs except mine were written by parents. It only took a couple of months for me to realize how wrong I was. Not only is there a community that is both wide and deep, there is a multi-generational written legacy. It’s mostly preserved online and spread through word of mouth, but there have been discussion groups, both public and private, for about as long as there has been an internet. The documents produced by those communities and published in a mixture of print and ebook anthologies, blogs, journals, and even grassroots ‘zines represent years of documented lived experience, complete with critical commentary.

The thing is, if you’re not talking to us, you’re not likely to find a lot of the important work that’s been done. This means that your ideas about what your students might expect as they grow up and enter our community are not likely to be very accurate.

It’s not that any of this information has been kept secret, either. It’s just that spreading the word is difficult when you have medical professionals, teachers, legislators, and even some parents of autistic kids pushing back against you with their ill-informed (but not always malicious) preconceptions about what you’re capable of or how challenging your school years were.

The fact is that there are a lot of us talking about our personal growth and development, documenting when we talked, when we wrote, what we wrote about… We’re not just philosophers telling you what we wish you to believe about ourselves—we’re also a grassroots-organized coalition of observers who are writing themselves up as case studies and sharing the results with one another. We’re taking notes about how many other people we see in our community share which traits, and we can do this because we’re all sharing our experiences with each other and listening to one another.

The conversation’s still in its early stages, but there’s even work being done on the ways that autism might impact our perceptions of ourselves in terms of gender presentation and sexual orientation. In addition to that, there are Autistic people representing a diverse array of ethnic, racial, regional, and traditional cultures writing about their experiences, including the difficulty they encounter when attempting to access basic educational resources. Often, they offer an intersectional and critical point-of-view that is informed by many of the same writers you read during your formal education and training.

We have conferences and we network, too. If you’re not seeing our promotional materials yet, then maybe it’s time to ask yourself what communities you are participating in, and what those communities can do to improve their representation of our voices.

1. You’ll learn why calling us “self-advocates” isn’t quite right

It’s not that the term is offensive. It’s not even that it’s necessarily inaccurate—I am a self-advocate when I need to be. It’s just that “self-advocate” doesn’t really describe what I’m doing most of the time. Look back over this article. My advocacy here isn’t for myself. I don’t benefit from changes to the K-12 curriculum, I’m over thirty.

It’s totally appropriate to call me a “self-advocate” when I am engaged with either public policy debates or interactions with the medical community because those are times that I’m actually advocating for myself and trying to gain access to resources and supports. Similarly, it’s totally appropriate for you to want your students to grow into self-advocacy. I’m absolutely not arguing against the term or the goal.

The issue comes in when you refer to people who are taking time away from their personal and professional lives in order to educate you or help your students as “self-advocates”. In that context, it becomes an erasure of our contributions to the ongoing conversation, because it labels our attempts to act as role models, as teachers, and as community members as self-centered acts. Maybe not selfish acts, but self-centered acts.

The fact is, though, that our attempts to reach out and to do these things are not self-centered acts. They are acts of absolute selflessness. For many of us, re-engaging with the K-12 school system and/or its representatives is stressful. When we do it, it is out of empathy for students that remind us a lot of ourselves, and it is for their benefit. Not ours. Not yours.

We don’t reach out to people in your profession to advocate for ourselves, and we don’t do it to tell you how to do your jobs. We do it because we did not have role models that reminded us of ourselves when we grew up, and we don’t want today’s generation of Autistic kids to grow up without them.

So don’t call us “self-advocates”. At least, not when we’re trying to advocate for something larger than ourselves. Go ahead and call us activists, because we’re working to build a society that is different from the one we were born into. Call us mentors, because we don’t just want to help you to communicate better—we also want to help your students learn to be adults in our community.

Or you can call us teachers, because a lot of us are. More than you might realize.

Photo Credit: Chris Sloan

Michael Scott Monje Jr. is a writer and writing teacher from West Michigan. Ze holds an MFA from Western Michigan University, where ze also teaches first-year writing. Zir novels include Mirror Project and Nothing is Right. Before becoming a college writing teacher, Michael worked part-time for the Kalamazoo Public School district for several years.
Michael blogs at Shaping Clay, where ze posts essays, poetry, and the web serial “Defiant.”

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