Tomorrow Is Too Long to Wait for Inclusion

You Just Can’t Take Me Anywhere!

can't take me anywhere

My parents used to say, “We just can’t take you anywhere,” meaning I could not be trusted not to cause a “scene” – and for parents who valued appearances in society as they did, this was quite the denouncement.

It has only been four months since I emerged from extreme isolation and denial of my social difficulties – the way I dealt with it was by NOT dealing with it: staying isolated and alone, the way I like it. I honestly prefer to be alone, and, until recently assumed most autistics were like me.

NOT so. Even some of the most severely impacted are not as misanthropic as I; in fact, they are surprisingly affectionate. I am beginning to consider perhaps my hermit-like qualities are not even related to autism at all. However, the fact remains – I am still as averse to being with other people for more than an hour at a time, maximum. I simply do not LIKE them when I am required to be in their presence. They irritate me supremely and my hostility and aggression, when irritated, is still not completely under my control. I no longer profess to “hate” them as I did vehemently when younger (and before Buddhist training), but still resent any occasion where I must interact face to face, unless it is a structured activity with clear rules, like sporting activities or firefighting. One on one contact is preferable, as there are not as many variables to attend to, but I prefer digital and online communication – I express myself best there and do not get as frustrated, as I control the interaction and can step away when necessary when getting frustrated.

As a child and adult (up until 1999, when my last documented episode of public aggression occurred), I was extremely aggressive, and, for this reason, was placed in very restrictive settings where they could physically restrain me. I saw no reason not to be so violent until multiple arrests and beatings from the police forced me to re-evaluate my public lashing out. At that time, I discovered Buddhism and its practice of non-violence and rose to the challenge of changing my behavior. I was successful; however, my primary strategy was to limit my exposure to provocative situations, which meant not venturing into public except when I most others are not present- i.e., never being out in rush hour, going to an all – night supermarket at 4 AM, etc. This did not completely curb my physical and verbal assaultiveness – as recently as a few weeks ago I hit my support person as he was attempting to restrain me from engaging in another obnoxious behavior – disruptive yelling late at night. The difference is now I feel remorse and truly do not want to be this way.

Here is an article on aggression in ASD: Aggression in autism spectrum disorder: presentation and treatment options

The article above spends much time discussing antipsychotic medications, which have been tried on me, to no avail. First off, I am extremely sensitive to the neurological side effects such as Parkinsonianism/Extra Pyramidal Symptoms. My diaphragm seizes up, and I cannot move the muscles needed to breathe. This makes antipsychotics potentially deadly for me. They also did not ameliorate any of my behavior issues, and since I do not have a thought disorder (schizophrenia), they are useless and harmful for me. Ritalin and the stimulants, which I was on for many years, also do not help in the long run. Neither do any of the other classes of drugs and, believe me, I have been on them all. Buddhist practice and the willingness to change are the only things which have worked for me, and for that I am grateful.

Thank you, Autistry Studios, for helping me seek resources which may help with self-control, like this one:


It may seem simplistic, but I have never attempted anything like this. Only the challenge of following the Buddhist precepts has inspired me to try. When others were trying to control me, I resisted strenuously -and my will is incredibly strong.

I am doing better regarding aggression, but have a long way to go – had I not ventured out on those two days I may still be under the illusion I now have it all under control.

On the bright side – I no longer fight with strangers – nearly all aggression is verbal now, and even that is infrequent as I know my triggers and usually avoid them. I also did not wear my weighted vest, which DOES help calm me -and both days I FORGOT MY SQUISHIES! It is remarkable how much these items calm me. It is also remarkable how often I forget this.

As far as lashing out at my support guy – I AM sorry, and even that episode was minor.

Photo Credit: Ben Seidelman/Flickr

Source:  Just Can’t Take Me Anywhere! – Autistry And Me

I am Christian Espicha, an adult woman with autism. Though diagnosed as a young child with autism, partly because I also possess a genius IQ, I did not receive appropriate services until recently when I became a client at Autistry Studios in San Rafael, CA. Recently, at age 45, I was the oldest member of the Humboldt County Structure Firefighting Academy to graduate. Also, I completed EMT training and worked as a firefighter/EMT in Trinity County, California. I performed, with my fellow firefighters, mountain rescues, and recoveries assisted the Forest Service with fires in the Trinity National Forest and assisted with water rescues/recoveries on the Trinity River. I am also a writer and artist. See my website at and autistryandme on Facebook and follow me @Screenshotaut on Twitter.


The Reality of Inclusion Is Not as Simple as You Think

Inclusion is the goal.  It’s the ideal way for students to learn, because inclusion seems to be synonymous with equality.  Everyone deserves to access the curriculum.  Everyone deserves to form relationships with people who are outwardly different or invisibly so–that’s how it will be in the real world.  Everyone benefits from the classroom strategies that support students with disabilities.  Those are all true statements… but add a measure of reality, and it’s not that inclusion is no longer good, but the effects for the people involved are not as simple as we want them to be.

I was diagnosed with autism at 21, and it wasn’t a shock for my family nearly so much as a finally!  The issues were not unnoticed–they were only unnamed, and it was very, very hard.  In school, I was way ahead of the game academically, but I often heard that I was “smart enough to know better!”  Know what?  I hated the crowded halls, the lights, the alarms… I actually felt sick from overstimulation but had no way to understand or communicate it.  A “2E” kid (twice exceptional, both gifted and disabled*) with only one E identified has half her educational needs unmet.

Twenty years later, the real world is just as challenging. I’m very verbal with facts and information, but true expression comes through writing far better than speaking.  I’m extremely hypersensitive, and grocery shopping is something I still need direct support to manage; I have trouble making sense of the items on the shelf, because they blend together.  I might as well be looking at a math test or a fish bowl.  The explanation helped others understand, but it took 25 years and maybe awful grocery trips to get there.  Sensory overload impacts my communication, especially when I’m out, so you might get half the correct words, quite a few it’ll-do words, and a lot of pausing… and they go through a blender before I say them, so they might be out of order, too.  I’m often misunderstood and then very frustrated.  Socially, I have little in common with most people my age, unless they like cats, and too much noise or fast-paced conversation are a roadblock to participation.  It’s not that most people want to exclude me.  The barriers aren’t really in their control any more than they are in mine… not unless people stop having multi-person conversations and shoppers stop bumping other people…

Most classrooms have sensory, social, and communication barriers built right into them, too.  Being with a horde of same-age kids who were essentially twice my age socially but half academically and facing changes in schedules and subs who use sarcasm… the lights flickering, the bright posters all over the walls, the hurry-hurry-hurrying, the handwriting… the balls that fly around at recess, the screaming lunchroom with its permanent stink, the bus ride home… even if every student were nothing but kind, there are many reasons that school is inherently exclusive to some kids.  It was much harder to be in the room and look in the right direction than it ever was to get my straight-A grades.

As an adult, having been mis-labeled, mis-understood and just downright baffled long enough, I’ve mostly secluded myself.  Work, leisure, friendships–all based in the autism/disability communities.  I’m involved with an autism nonprofit; it’s both my job and my (only) social outlet. I love that I can mentor instead of being an actress.  I can engage without the fear of a dead end after one question–I still get stuck, but they see the social connection and not the poor delivery.  If things get hectic, I can retreat without being badgered or seen as rude.  I came in late recently and joined the eight other girls at the table.  I was greeted with questions about my cat, how she’s doing, did I have new pictures–my love of cats has typically been cause for a little sarcasm and a chuckle, but these friends, none of whom are all that into cats and with their terrible social skills made me feel like I matter.  I do matter, and I know I do, for the first time in a social setting.  That’s a great feeling, mattering, because they matter to me.

But it definitely doesn’t qualify as an inclusive setting–it exists as a safe space by nature of it being segregated from “everyone else.”  Maybe inclusion isn’t about the other people present or the specific location so much as it’s about the individual’s experience in a setting.  Plopping the autistic person into a group or classroom does not mean it’s inclusive.  The same space, the same information, the same opportunity–they can be even more other-ing by making the differences even more obvious.  True inclusion is a layered, complex thing, but if it’s going to work, the child first and foremost has to feel like a part of things.  Forget jumping into the gen ed class for social studies–the child needs to know what had the class cracking up that morning.  He needs to be a part of the transitions before and after social studies, not inserted into a chair once everyone else is ready.  He needs to be part of the routine, not exempt from it.  He needs responsibility in the classroom, to serve in meaningful ways and not only be served.  He needs to feel free to participate without others staring, to take a guess at the answer without fear of being wrong.  He needs to feel like he can asks questions and respond to other students.  He needs to explore his own strengths and weaknesses. He needs to be treated as a peer; children need to understand disability and capability are not opposites, and that we all show our strengths in different ways.

Inclusion is more about a culture than it is being privy to the same information or experience.  I can sit with my typical peers at a game or go out to dinner and be surrounded by the same conversation… I might hear all the same words, I might see the same plays on the field, I might even have information to contribute… but the sensory, social, and communication barriers in those settings keep me separated.  It feels like their evening wouldn’t change if I poofed into thin air.  If the highest goals of inclusive education are for people to be in the same space for a little while or even for them to be in the same space and attend to the same thing… I think there are better ways to spend our time and effort.  But our goals are much broader, deeper, and worthier than that–we want to foster mutual comfort, connections, and guide students toward seeing past labels to the competence and value in everyone.  When the “included” student is wheeled in and parked on the side of the classroom halfway through the class and the rest of the kids don’t know more than his name and his wheelchair, kids are taught how to tolerate that child in their space for a time. They learn to ignore their curiosity and steal sideways glances to figure it out.  They see that the “included” child must always have an adult right next to him like the baby brother at home.  Not surprisingly, the adult disability community talks about those very same barriers.

In the autism-only spaces of my life, I’ve learned things like reciprocation, when to hold my tongue, and what to do when I don’t have the right words or need a break or need help.  I’ve learned about myself as a friend, an employee, and a leader… that I can ask someone to turn the volume down, that I’d rather be seen as a little odd for being kind than hold back for the sake of being normal.  I was never comfortable with men and feared people who felt authoritative, so I have only ever interacted with other girls and young women.  Finally, I have friends of every sort without fear; I’ve learned that I may have a lot in common with a kid half my age and how to interact with people when there are really no common interests (answer: awkwardly!).  The center is a safe haven, but not because it’s all people just like me.  Familiarity with autism is the only unifying factor there, and that does nothing to make us a uniform crowd. It’s really the culture, one where things like kindness, creativity, and giving someone the benefit of the doubt are the currency–instead of the common currency of impressing other people.

Finally (and cautiously…), it doesn’t quite sit right with me that spending time “included” with everybody is automatically valued over spending time in a segregated setting.  In school, many of us get hung up like pinatas while some “typical” peers take daily strikes for years–and yet this is the social scene where we’re encouraged to learn to belong?  I had some experiences like that, but even more, I ran into situations where I would ask if there were issues between a friend and I, knowing that I don’t pick up on them, and the friend would say no and then later tell me I should have known she meant yes.  I like my friends who use words that mean what they say.  I don’t worry about every chuckle being at my expense.  They aren’t my last-chance friends; they’re the people who are fun and supportive, ones who share my interests and make me feel like I’m valued as a person.  A disability alone should not disqualify a kid or a group as first choice friends.

A setting is considered more or less restrictive because of the people in it.  If we had a self-contained room and a general ed one and switched the kids, we’d have switched the level of restriction.  While a separate class might feel like accepting defeat after a series of failures in less restrictive settings, consider the people who define that setting and how tied up in the “last option” concept their identities come to be.  I think about the sad fact that if we were all the same age, my closest friends and I would have never even known each other existed if we attended the same school.  We pull kids out of the general ed classroom for being disruptive or needing sensory breaks or taking too long to learn to read, but the kids who bully or manipulate others even to an extreme aren’t pulled to a restrictive social environment.  After years with those kids (and adults), I was having a tough time, so I focused on the healthy friendships in my life and the places I liked to be.  For now, I’m staying right here, where I’m challenged and amused and supported and needed–I’m exactly who I am, and I’m happy.

We get a lot of promises from people who have just the thing–books, games, apps, plans, curriculum sets, charts, devices, diets, programs– to teach us how to act more like them so that maybe someday we just might be “included” in their world.  But it’s funny… they never ask how they can learn to be more like us…

Photo Credit: Bust it Away Photography/Flickr

Lydia Wayman is an autistic young adult and advocate. She has her B.S. in Elementary Education and MFA in English and Creative Writing. 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.

Apples and Half-Oranges

Apples and Half-OrangesBy Lydia Wayman

I had my first full IQ test (the WISC, or Wechsler Intelligence Scale for Children) when I was seven years old.  Now, side note: please bear with me as I paint a picture of a snobbishly bright kid; while I wasn’t really snobby as a kid, I certainly had a boatload of my own equally-annoying attributes, but the young me I’m about to describe will make me sound snobby indeed.  Keep reading, and we’ll all be back on the same page.

At six, I was reading beyond an elementary level.  I was pulled out each day to be taught from the fifth-grade reader.  In actuality, when I came home from school on the first day with my brand new reading book, totally mesmerized at the idea that I had a real school book, I devoured the text in under an hour and went to find my sister’s sixth-grade material, which was much more interesting.  When we learned to spell and write color words, I passed the time at my desk by considering whether it would be possible to teach a toddler that blue was called yellow and green actually called orange; could we purposely distort a young child’s reality by teaching him what wasn’t?  In the back of the minivan on the way to school, I distinctly remember sitting in the second row, where I could rest my arm on the window, wondering whether a person could be naturally gifted at a completely unnatural talent, such as driving.  Though kids were not referred for gifted education in my district until at least second grade, I think enough instances similar to those above alerted my teachers and thus began the testing process.

Though I was excited to be pulled out from class for a novel activity, the test itself was all fairly mundane until we got to the subtest in which the examiner held up white cards with incomplete drawings and asked me to name the part of the picture that was missing.  Here’s a house—oh, but it’s missing its roof.  Here’s a dog—ah, poor guy doesn’t have a nose.  That was the idea. And I went along… until the examiner showed me half an orange.

I sat.

I stared.

I would say I looked up at the examiner but eye contact has never been my thing, so I much more likely began to pick at anything within reach, probably my fingers, as I still do today.

“I don’t know,” I told him.  After enough volleys of his encouragement and my totally flummoxed lack of answers, he finally set it aside and we moved on.

That was twenty years ago.  I can still see the picture as if he were holding it up right now, and yet, I have not the least idea of what was missing from the orange.

It’s gap in my knowledge base.  We all have those.  No big whoop, as my mom would say.  Except, I had a lot of gaps in my knowledge base.  At two, I could describe the life cycle of the aphid, but I didn’t reliably answer direct questions for some years after that.  Not long ago, I asked my mom how old I was when I finally began to greet others with “how are you?” reliably, and she said that she was still awaiting that day.  I rarely remember to introduce so-and-so to such-and-such and I will walk right by a guest to ask my parent or boss an important question without ever acknowledging the visitor.  I work hard to think of an appropriate question to add to a conversation, but my timing is rotten, so I tend to completely interrupt when I interject it, which makes everyone do this awkward little dance.  The person answers me, and then I walk away, because I haven’t anything else to say.

And the orange.  The reason I don’t know what was missing from the orange was because I had never eaten one.  I’d never peeled one.  I’d never even held one at that point.  I had food and oral aversions so severe that I only ate about ten things as a child.  I would have vomited if a piece of orange went into my mouth.  Twenty years later, not a bit of that has changed, at least with respect to citrus or any other raw plant material.  I have zero orange experience, so how would I know anything about the details of what should be inside of one?

This perfectly captures the idea of “twice exceptional.”  I have a test-ceiling verbal IQ and a decent performance IQ, depending on the test and my age and whether I’d had surgery the day before (that one was quite fun).  I’m also autistic.  I am unable to cross a road, grocery shop, or fill out many common forms without help.

The degree of my ability does not negate the reality of my disability, and so, to say that I am “smart enough to know better,” which I heard so often I’m surprised I didn’t begin to think it was my name, is wildly inaccurate and also very ignorant.  The opposite is every bit as true; the degree of my disability should never lead to someone expressing shock in my ability: You went to college?  Yes. Grad school too, with a 4.00, thanks.  You can drive?  And not just on the Go-Kart course—how about that!  Actually, I’m afraid of Go-Karts; they’re too loud and they smell bad.  But, for balance, I also do not drive in the city, or on most highways, bridges, or tunnels.

Most people evaluate the world around them, including other people, by their own experiences.  They have ideas about how the world works because they have certain memories to use to judge new things that come their way.  And they judge others’ minds by the way their own minds work.  So, for many people, a person who can do x can also do a whole long list of things that are, in their minds, equivalent to the difficulty level of x.  And that person can’t do a bunch of things that surpass the difficulty of x.  We mentally evaluate other people based on our own understandings.

And the idea of IQ upholds that kind of thinking.   A person with an IQ two standard deviations below the norm can be expected to do this, that, and the other thing as an adult.  For every 15 IQ points, we create another category and create a list of things a person in that category can and can’t be expected to achieve with some degree of work but not too much.

That’s all great on paper, but in my world, in which there are a lot of people with all sorts of disabilities (I usually call them my friends), all of that goes completely out the window.  And it’s worth considering whether the whole idea of IQ isn’t most important for people who are significantly above or below the average.  How badly do we really need to know that Joe is totally average and thus we can teach him like we teach everyone else?  But how badly do we need to know that Sam will need intense support, and Laura needs extensive enrichment activities?  It really is worth considering.

But people with disabilities or exceptional ability to learn in specific (or all) areas are those for whom our current use of IQ is hardly useful.  I grew up extremely bored in class, but when I voiced my boredom in appropriate settings, my teachers said that I was too disorganized and thus was not permitted any enrichment work.  There was no consideration that I may have trouble with executive functioning skills, which were in no way oppositional to my high IQ but part of a larger picture that pointed to my Asperger diagnosis far earlier than it was actually given.  What good is it to assign a child a number, an IQ score, that makes adults believe the child should never have any weaknesses or faults or struggles in learning?  Please, hear me: It’s not good at all.  “You’re smart enough to know better” continues to haunt me; my answer was often, “Know what?”  I never even knew what I missed.

My good friend Clara was in regular education classes all through school until she dropped out in tenth grade, which was her first year in special ed.  Clara is significantly disabled in math.  She can somewhat tell time but reading a thermometer poses a problem. She had at least one IQ test in which they said they would not provide a full-scale score, because her sub-scores swung so wildly, an overall average didn’t even make sense.  So, for some years, she had no services even though she had an Asperger’s diagnosis, because services in her country are based on an IQ below 70.  She was finally tested again, and then, the third time, her full-scale score came back, as she told me, somewhere in the 50s.  This is at once entirely meaningless to our friendship and yet infuriating on so many levels.

First, her entire school faculty, every teacher, every support staff, even the special ed teachers never once noted that they were working with a student with intellectual disability (ID).  Knowing Clara well and having an education background, I can say that in her case, an ID label should not have changed what Clara was expected to learn but it should have changed very much how her teachers approached teaching certain concepts. Second, when she was fully evaluated by a neuropsych and diagnosed with Asperger’s, this was missed yet again.  To boot, Asperger’s cannot be diagnosed in a person with IQ below average; the correct diagnosis, pre-DSM-5, would have been PDD-NOS or autistic disorder.  When the most recent score came back and the referral was made, Clara got services in place fairly quickly… services she was denied for more than five years, which meant her life had come to involve few outside connections because she did not have the support she needed to participate in community live.  Her anxiety grew more and more intense, and it became very hard to leave the house, whereas she had been teaching classes at the library just a few years ago.

The final point of infuriation is that Clara’s IQ is stamped on her forehead when it comes to the staff who serve her.  I wonder if she hasn’t become her disability in their eyes.  In some ways, Clara enjoys activities that are usually geared toward much younger children; for that matter, so do I, and we often chat about our shared interests.  In the standard-human way of thinking, an IQ in the 50s and enjoyment of Disney means that Clara must only understand certain words and ideas.  To upend that thinking, she and I met six years ago and our friendship exists almost exclusively via online chat, as in, fully in writing, which she does with ability much beyond the average adult.  It also involves some video chatting as well as international mail.  But for another thing, this young lady used the word “impudent” in casual conversation the other day.  I promptly turned to Webster to get a better grasp on its meaning. She is a practical but creative problem solver, a powerfully connected listener, and a hilarious observer of the world around her.  It’s almost never a problem for her to understand what’s happening around her… it’s that she has the smarts to see the ways in which it is utterly ridiculous.  And we do laugh and shake our heads at the senselessness of normalcy.

My most commonly-sung refrain in autism advocacy just might be the idea that people are extremely complex, and that autistic people, also being human, are not barred from that truth.  I express my frustration at categorizing autistics as high-functioning and low-functioning, because I cannot see any good that will come from chopping the ultra-complex nature of humanity into just two categories.  Now, we see more and more that even something as long-held as the gender binary is far more complicated than we ever allowed ourselves to know.  All this being what it is, an IQ suddenly seems the most preposterous of all.  One number.  Has a single number of any level ever had a greater potential to impact your life? You, as a person, your status, ability, and potential is fully held in one single value.  If that value is very high, then you are not allowed to have any legitimate struggles.  If it is very low, we withdraw your permission to have any true talents, or, if you do, we express total shock, put you on the news, and hold you up on a pedestal… because who could ever expect you to do that great thing?  Had Clara and I been in the same school, we never would have met one another, never shared a classroom.  We would have been deprived of countless laughs, many moments of encouragement, international Christmas gifts, and long-distance phone calls to hospital rooms… no matter how much we are alike, learn from one another, and enjoy being together, we would have been separated because our numbers were too far apart.

The orange has followed me.  It has come up in my mind quite often over the years, and I see the picture, and I think yet again about what it’s missing, what I’m missing.  I’ve even tried to Google-stalk it, but apparently WISC tests for 6-year-olds circa 1994 are too obscure even for Google to file in its history bytes.  Perhaps neither of us, the orange or me, is missing anything at all.  Perhaps, like me, it’s quite as it ought to be and will serve its job as it was meant to do.  Some people will look at it oddly and wonder why it doesn’t have its whatever-it-is, but most will be far too caught up in its lovely scent and the joy of peeling it in one piece as only an orange can be peeled… and we will still have to support it so that it can do these things to its very best potential.  There is no shame in a graft to fill in a dent in the orange or a visual support to make it easier for me to communicate my level of overstimulation in public.  With the right support, everyone can take in all our best attributes rather than getting stuck on my shakiness in small talk or the orange’s lack of, well, whatever it is that it was ever lacking.  I’ll tell you what—I never noticed anything wrong with that orange.  Maybe nothing is wrong, and the test designers were far too focused on a single faulty attribute such that they missed out on all the greatness that orange had to offer.

Photo Credit: Adrià Ariste Santacreu/Flickr

Lydia WaymanLydia Wayman is an autistic young adult and advocate. She has her B.S. in Elementary Education and MFA in English and Creative Writing. 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.

Advocacy and On-The-Job Disclosure Belong to Those Who Are on the Autism Spectrum

Advocacy and On-The-Job Disclosure Belong to Those with ASD

Photo Credit: Legozilla/Flicker

By Kathy Porter

If you are an adult on the autism spectrum, advocacy and disclosure belong to you. Whom you decide to tell and the timing of when you choose to share this information also belong to you—because it’s your autism. It’s that simple.

Or is it?

My fear, watching my adult son re-enter the world of vocational social service agencies after ten years of steady but disappointing employment, is that his voice will be swept aside because it contradicts their well-intentioned, one-size-fits-all disclosure policy.

My son’s hard-won realization is his understanding that Asperger’s Syndrome affects his work style and that his job performance is better when his employer knows this.

He’s come up with a list of adaptive strategies that he wants to discuss with potential employers… before he’s hired.

Now, all that remains is convincing the agency staff with whom he’ll be working that his decision to disclose during job interviews is part of his self-advocacy. Because even though it’s his autism, he’s going to need their help.

And that’s the big Catch 22: before they can fully embrace my son’s ownership, they have to give up theirs.

Once that’s done, the relevant question becomes: how does he verbally take the lead in his self-advocacy when he needs communication assistance?

Create Your Own Asperger’s Script

What to say and how to say it is Alan Muir’s expertise. Muir, the Founding Executive Director of Career Opportunities for Students with Disabilities (COSD), suggests that creating an “Asperger’s script” and practicing it before the actual interview is good strategy.

Job candidates who are on the autism spectrum”can quickly explain about their ASD diagnosis and follow that up by saying, ‘How I’ve been successful in the past has been….’”  At this point, the job candidate describes any relevant strategies he/she has used in a past job or in school that were beneficial.

A few examples might be:

“How I’ve been successful in the past was to work from a written list instead of verbal instructions.”

“How I’ve been successful in the past was to remove any unnecessary distractions—I typed reports in an office away from the reception area.”

Finish this part of the conversation, says Muir, by asking: “Is that something you can do for me?”

All of these conversations uniquely reflect individual experience. The autism spectrum has been broadened to cover such an infinite number of attributes that every formal diagnosis is different; each Asperger’s script is its own fingerprint—no one script will be like any other.

It’s important, Muir emphasizes, that any accommodation (adaptive strategy) be “specific and germane to the task.”  That suggests that there is a benefit in placing the self-advocacy conversation during the interview after you talk about the job description, because you might have to ad lib.

And that means you have to practice.

“Your son,” concludes Muir, “needs to get his Asperger’s script together.”

Which he’s done. With my help, he’s created mini-scripts: one or two sentences using benefit-driven language to talk about how his being on the autism spectrum affects both his learning style and his work habits.

Here’s the beginning of his Asperger’s script:  “Asperger’s affects my work style and what I’ve found is that I’m a better employee when you know what this means.”

And here’s part of his self-advocacy conversation: “Communication is something I have to work on so I’ve written down a few things that we can talk about.”

Don’t Let Someone Else Tell Your Story

This is my son’s story and he’s chosen how he wants to tell it. That he has to first tackle an agency’s policy of “but we’ve always done it this way—our clients disclose after they’re hired,” breaks my heart.

Because they’ve “always done it this way” says everything about their “normal” values and nothing about my son’s autistic values. It cripples his self-advocacy before he’s even walked in their door, implying that they know what’s best. It’s an outdated assumption. Worse, it’s patronizing.

Because they’ve “always done it this way,” I know they’re not listening to conversations taking place on- and off-line among parent advocacy groups, bloggers, young adults on the spectrum and autistic adults over the age of 40. Advocacy conversations are being driven by their voices… voices pushing the tipping point of 21st-century autism awareness.

Voices like John Elder Robison who writes in his July 8, 2014 blog post that it’s “…time for a shift of balance in some of the organizations and groups involved with autism… Parents, family members, guardians, and professionals have a place at the table, but let’s recognize that it’s the autistic people’s table and parents, friends and helpers are the guests, counselors and advisors, not the leaders.”

Voices like M. Keller, diagnosed with Asperger’s Syndrome at age 30, whose blog, Invisible Strings, is such an eloquent resource about “decoding the social world.”

The collective voice of ASAN (The Autistic Self-Advocacy Network), which is a nonprofit organization “run by and for Autistic people…  created to serve as a national grassroots disability rights organization for the Autistic community, and does so by advocating for systems change and ensuring that the voices of Autistic people are heard in policy debates and the halls of power while working to educate communities and improve public perceptions of autism.”

The voice of Tim Villegas and the voices he brings to Think Inclusive, “an online resource that promotes the full and authentic inclusion of people with disabilities in their schools and communities through education and advocacy.”

The collective voices of the Thinking Person’s Guide to Autism (TPGA), which stands as “the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.”  They have a Facebook community of almost 100,000 participants that is one of the most actively engaged, supportive groups online.  If you have to start somewhere, start here. I did.

Advocacy is a Learned Behavior

I found digital voices that spoke to my heart by immersing myself in autism and advocacy language online. I read blog posts and comments, clicked over to community Facebook pages, spending hours reading posts and comments there.

I waited up to six months before participating, because I was still learning. I needed to hear autistic adult voices before I could support my son with his own self-advocacy. By the time I looked up from my computer screen, I was ready to find out what was happening in my own community. I hoped that the barren landscape from ten years ago had changed.

It had. I reconnected with a parent support group that is now expanding its programs and services to support adults on the autism spectrum. I discovered conversations taking place among local business and thought leaders at universities about the benefits of hiring individuals with disabilities.

I started having conversations of my own. I reached out to local business owners and professionals, asking them to share their thoughts with me about hiring the developmentally disabled. I wanted to know how they felt about disclosure and if they felt strongly about where it should take place in the hiring process.

“Me, personally?” smiles Kellie Scott-Reed. “Legally, we can’t ask but I’d love to know.”  Reed is a Human Resource specialist with ten years of experience in both corporate and small business environments.  She describes what happened to one employee who decided not to disclose.

“We’re a call center so most of what our employees do is talk on the phone all day. The day after we fired her, I walked into her work cubicle. Every inch of her desk top and wall space was covered with post it notes detailing every conceivable conversation she might handle in a day. What a customer [who was] not happy with a service might say and what her response should be.  What she should say if a guy wanted to add on to services. What kinds of questions she would have to research first before offering solutions to that customer.

“The detail was astounding. My nephew has Asperger’s [sic] and reading all of her notes, I wondered if she did too. If I’d known, I could have restructured her job description so that there was less phone time. But she never said anything, even after three unsatisfactory performance evaluations.”

The missing voice in this story is, of course, the voice of the young woman who lost her job. Was Reed’s interpretation of a meticulously detailed work space correct?  Did it signal the careful documentation of someone on the autism spectrum? Maybe. Then again, maybe not. But if she is autistic, not disclosing was her choice. And, that’s what important.  Because it’s her autism.

Self-Advocacy Starts With Where You Are

I also spoke with Julian Roux, an engaging, articulate, 20-year-old college junior, summer camp counselor and semi-professional poker player. His most important role? He’s a “fervent self-advocate,” andthis is his story:

Ever since I was diagnosed with Autism and PDD at 2 ½ years old, and eventually re-diagnosed with Asperger’s Syndrome when I got older, my parents have taught me the importance of being a self-advocate, and they’ve taught me this skill in many ways.

They taught me to speak up at IEP meetings and file for testing accommodations at my college to help enable my success.

Going into my fourth summer as a camp counselor, I know just how important self-advocating and disclosing is, especially during a job interview. Before I started my first summer at a local summer camp located outside of Rochester, NY, I disclosed my Asperger’s to my interviewer when I was asked questions. Before the interview, I was both nervous and excited at the potential opportunity to have my first job. At the same time, I was afraid of screwing up my communication between the interviewer and myself due to my autistic tendencies.

In that process, while it felt liberating to show my prospective employer a huge part of who I am, there was also a lot of empathy and admiration from my interviewer.

In addition to disclosure, I explain that there might be times when I’ll get stressed out and need breaks – whenever I feel like I’m losing control. Children in a group who continue to bully one another would cause me to feel stress, which could lead to a meltdown. I would manage this by taking a five minute break to take a breather and think.

Julian’s willingness to talk about his Asperger’s with a relative stranger – someone who has the authority to offer him a job, no less, is a quiet act of courage. His admission that he finds kids’ nonstop teasing personally stressful makes him vulnerable. He’s just given the interviewer the best reason in the world not to hire him.

Why, I asked him, do you think you were hired?

I know that my success in this job is because I disclosed my Asperger’s to  my interviewer—that I got hired simply because I was honest about my Asperger’s: how it might exhibit itself on-the-job and what my solution for managing a potential meltdown caused by a stressful work situation would be. However, at the end of the day, the buck stops and you need to find a way to manage your Asperger’s.

Where Are You?

Clearly, Julian is an enthusiastic self-advocate who believes that “without asking firsthand for services, yourself, people may not know what you need.”  Before we finished our conversation, he pointed out that “language and the social climate that leads to the chronic unemployment among autistic individuals—two factors that can suppress an autistic individual’s chance to advocate for what they need—need to change; that autistic individuals flourish at work once they have a say on when they disclose on-the-job.”

…if disclosure is part of the equation.

There are adults on the autism spectrum with satisfying careers who never reveal their autism to their employers.  That’s part of another conversation.

For adults on the autism spectrum who aren’t comfortable advocating for themselves, because communication is hard for them, it’s important that they partner with people whose language aligns with theirs so that their fledgling self-advocacy isn’t hobbled by erroneous assumptions.  If they’re just beginning their self-advocacy journeys, their language will reflect the language of their parents or primary caregivers.

If that’s you, start by listening to other peoples’ conversations. I’ve given you more than enough resources to get you started. Take note of the words that resonate with your heart. Listen for them when you start your offline search for social service agencies that support the intellectually and developmentally disabled.  It’s okay if you make a few mistakes as you get comfortable with the process.

That’s when I redoubled my search, tossed out the language that wasn’t working (along with the people who were speaking those words) and listened harder. If you do all of this and don’t give up, you’ll find what your son or your daughter needs. This I promise you.

What do you think about on-the-job disclosure? Tell us about it in the comments section below!

Hensel_PRrKathy H Porter is a freelance writer, author and head cheerleader for her amazing son. She grabs inspiration from a background that includes 14 years of business experience and 17 years as an educator. Her latest project? Crafting work-related “explaining scripts” for autistic adults. Join her newsletter to find out when her next article will be published and to discover more useful on-the-job strategies for autistic adults. Follow her on Twitter: @kathyhporter
julianContributing writer, Julian Roux is a Communication major going into his senior year at SUNY Geneseo. He is also a summer camp counselor, and a semi-professional poker player. You can read his guest post “Autism and Its Impact on My Poker Experience.”  Follow him on twitter:  @jcrpoker

Another Take on Autistic Cultural Compentency

Cultural Competence

By Lydia Wayman

In William Stillman’s February, 2014 article on the Huffington Post titled Autism: A New Cultural Competency, Stillman uses the term Autism Cultural Competency to refer to the idea that the time has come for our culture to build its competence in how it approaches autistic people.  He says that our culture misunderstands and misinterprets those of us whose brains cause us to behave differently than most, and that we would do well to learn to make “compassionate accommodations” for those with differences.

I could not agree more with Stillman’s suggestion.  Yet, not in any kind of opposition but more of an altogether different direction, I read the words Autism Cultural Competency and took them to mean something slightly different.  What if—not instead of building our culture’s competency in autism but, in addition to it—we helped parents and professionals to build their competency in autistic culture?  What would be the result of an approach to autism that was founded on respect for the cultural mores and codes of autistic people?

Anyone who has spent time around a group of autistic people knows that we do, indeed, have our own culture.  As an autistic person, I try to decode the way our minds work in each of three areas so that parents come to an understanding of our ways rather than look at us with confusion, pity, or an aim to “fix” us.  Through this new understanding, parents come to realize that a relationship with an autistic person should be based on respect for our ways, just as the relationship with a person from another country deserves respect for their own culture.  I define autistic culture as having three components: our developmental trajectory, the way we relate to other people, and the way we relate to the world around us.

First, the autistic developmental trajectory directly informs the way we establish our culture.  Autistic people do not have a delay in development.  If that were true, we would follow the typical path but do so years later than typical people.  Rarely is this true.  Instead, we follow an altogether different path of development, one in which we gain skills in an out-of-order fashion,  display amazing gifts and surprising deficits, and in which we tend to have bursts of developmental followed by periods of lull.  As an autistic young adult, I am a great example of this uneven progress; I am finishing my Master’s degree in English and creative writing, yet I cannot cross a street without help, struggle with independent living skills, and possess a strong affinity for anything Disney or Hello Kitty.  This spike-and-valley development may be atypical for most people, but it is a totally typical way for an autistic person to develop and sets the stage in each individual for the culture we build together.

This different trajectory means that autistic people do not relate to other people in a typical way.  In groups of spectrumites, there are several differences in our actions  First, there is a deep respect for one another’s needs.  Some of us are very highly in tune to others’ discomfort; some of us aren’t, but, in that case, the moment a person speaks up about any kind of problem, whether physical, emotional, or sensory, the group dynamic immediately changes and attends to the person’s needs.  Autistic people also tend to relate on different levels.  Often, we prefer to communicate via computer chat, because it allows us to express our thoughts more clearly and relate to the other person.  We have built lifelong friendships over Facebook.  When we are together in person, we tend to be quieter (unless a topic of special interest comes up, of course!).  We know the value of quiet presence and support.  We attract stares when we’re in groups, and I want to say to those staring: Come join us, and find out what you’re missing.   Many parents put their children in social skills groups to learn to socialize like typical children; there is value in learning the skills needed to get by in this world, but, out of respect for autistic culture, it is important to allow the child opportunities to socialize like the autistic child he is, with other autistic children.

Finally, autistic people relate to the world around us in a unique way.  We are highly sensory-based in the way we interact with our environment.  We smell toys, pet cats with our faces, and spin just about anything, including ourselves.  Parents often seek to teach us to play with our toys the right way; I cannot fathom why there is a “right” way to play and to have fun, when play is about learning through fun experiences and fun is clearly based on individual preference.  As an autistic person, it is important for us to learn through our senses, because having the ability to calm ourselves through them is a key skill for an autistic adult.  We cannot stim the day away, but stopping our stimming so that we can listen and learn is actually doing more harm than good; our stimming allows us to calm our bodies so that our minds can engage.

The time has come for parents and professionals to become competent in autistic culture and build relationships based upon it; the result will be a sense of peace for the parent, a sense of contentment for the child with who he is and how his mind works, and a much more positive relationship between the two of you.

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.

10 Surprising Things Parents of Autistic Grads Must Know

10 Surprising Things

By Kathy Porter

Ready or not, you will soon be the parent of a high school graduate. If your son or daughter is on the autism spectrum, like mine, you might feel a tiny bit scared underneath all the euphoria of this wonderful time. Behind you trail 18 or so years of priceless memories—an uneven mix of happiness, frustration, extreme awfulness, fun adventures and educational milestones.

Ahead of you is a world of transition: the in-between stage that prepares your teenager for adulthood. The good and the bad news? There is no road map for what comes next. I know because 10 years ago, my son graduated from high school. Two years later, I searched desperately for that road map because he didn’t seem to be moving forward. Nine years after that, I realized that my family had cobbled together a hard won road map of our own.

Sure, there were days when we flew by the seat of our pants, dark nights when we didn’t have answers for the questions we’d learned to ask. We also had days when everything fell into place or when someone reached out to say, “Of course I’ll help you!”

Part of our story was finding out that despite his Asperger’s Syndrome diagnosis, our son didn’t qualify for a service coordinator after high school. He was, however, eligible for educational funds which would one day be a fantastic resource.

But right out of high school, diploma in hand, all my son wanted was a job and a car.

That decision put into play thousands of steps and an infinite number of decisions bringing him to where he is today. Looking back on everything he’s accomplished, I see 10 surprising things that I believe every parent of an autistic teenager transitioning into adulthood should know.

1. Learn to outsource

Let technology and practical choices work for you. Outsourcing is a pretty savvy time saver plus it takes the drudgery out of some necessary chores. Be smart and teach this to your teenager.

I’ll never forget the look on my son’s face when he found out that he didn’t have to type his own resume. Don’t get me wrong. He assembled the content. I wrote it all down. Then we hired a virtual assistant to format and type it. Once we had the template stored in a computer file, updates were easy.

2. About those life skills

Don’t accept that developmental delays can’t be overcome. Sometimes, what works best for mastering a particular life skill is to let timing take care of itself.

When he was 22 years old, my son’s independent living skills were assessed as “severely delayed.” At that time, he’d been driving for three years, was doing his own laundry, fixing breakfast for himself and doing all of the outside yard work. Over the next 3-5 years, he figured out how to: repair the kitchen drain pipe without supervision, schedule his own appointments, establish a solid work history, plan and make dinner, and program the GPS app on his smart phone.

3. Networking is more valuable than ever

You have a network of family, friends and professional colleagues. Never shy away from asking for what you need. People are so ready to help you. If you haven’t already joined a local autism support group, now would be the time to do so. You’ll find parents who are exactly where you are. You can help each other. And, you can reach back to offer support to the parents with young children who are now where you used to be. If there’s no local support group, consider starting one.

4. Look for volunteer opportunities

One of the best reasons to volunteer is to become a part of something larger than yourself. You get to spend time with like-minded people who share similar values, make friends, learn new skills; become a better you. If your teenager shows no interest in volunteering the first time you suggest it, ask her again in six months.

Knowing my son’s love for dogs, I thought he’d jump at the chance to volunteer as a dog walker at the animal shelter. The first time I suggested this, he brushed my comment aside. The next time I asked, not only was he ready, he handled all of the details himself. Two years after he started, a full time position as a kennel attendant opened up. One of the employees he knew suggested he apply. So, he did … and, he was hired.

5. Own the journey

If you find yourself in a deteriorating circumstance, don’t waste too much time in negativity. Once the shock has worn off, identify the problem, and then come up with a work-around for the benefit of your teenager that includes professional etiquette.

My husband and I had no reason to suspect that our son’s first job would be a disaster. He’d worked with a social services agency that focused on helping “disabled” adults find employment. Three months into this job, we knew he was in over his head. By that time, the agency had closed its doors. The only support our son had was us.

We sat him down and explained how he could ethically quit this job. Friends of his suggested companies he could target which led to job interviews he set up by himself. When a second company made him an offer, company number one received his two weeks written notice.

6. Find the teachable moments when work-related communication breaks down

In a perfect world, people are thoughtful, kind and respectful. Sadly, we know this isn’t always true. Sooner or later, your teenager will come face to face with a rude coworker. The first time it happens will be awful because she won’t be expecting it. (No one does.) Help her to find the words to defuse the next encounter… because it will happen again.

On two consecutive Saturdays, my son arrived at work, clocked in, and walked into the main lobby. One of his coworkers, a woman in her early 60′s, got up in his face and yelled, “Where have you been? You were supposed to be here an hour ago!” He was devastated but managed to step back, quietly explaining that no one had revised his schedule for an earlier arrival time. Not only did she refuse to apologize to him, over the next two months, she continued to harass him about his job performance.

He had no idea what to say to shut her up, telling me that anything he said might be grounds for “insubordination,” which could result in his being sent home. We spent several weeks talking about the best way to handle this. What could he respectfully say to make sure that this woman never spoke to him like this again?

After coming up with a sentence I thought would work, we practiced until it sounded like a spontaneous remark. The next time he was paired to work with her, she verbally jumped him. Seizing the moment, he said, “Your language is unprofessional and I don’t appreciate being talked to that way.” Her jaw dropped. From that day forward, if she couldn’t say anything nice to him, she said nothing.

7. Should your teenager tell a potential employer about her disability?

I’ve had this conversation with small business owners, people who work in the mental health and social services sectors, my son and one or two human resource professionals. Every single one of them has agreed with me. What they’re in agreement on is that knowing makes it so much easier to adapt job training and ensures that there are no on-the-job misunderstandings. The HR people I’ve talked with are quick to point out that, legally, they can’t ask. But, they’re so willing to listen.

Quite frankly, when our son was 18 years old, we didn’t know to ask. My husband and I assumed that the social services agency helping him find his first job would handle that part. Remember, too, that he didn’t then (and doesn’t now) qualify for a service coordinator. I don’t know if having one would have automatically raised that question. It’s a hard question with no right or wrong answer. The “right” answer is what works for your teenager. Today, my answer, for my son (which he agrees with), is a resounding “Yes!”

8. It wasn’t a bad job—it’s a job that wasn’t a good fit for you

Expect that somewhere in your teenager’s future is a job that she’s going to hate or one that she will be woefully inadequate to do. It’s happened to all of us so the odds are excellent that it will happen to her. Be okay with this.

I understand why my son couldn’t stick around his first job after high school. He was 18 years old drowning in sensory overload. Three months was as much as he could handle before his survival instincts kicked in. When the emotional dust had settled, he was a little wiser about what jobs he didn’t want. Better yet, when potential employers asked him for the best and worst stories from his work history, he had the perfect “how I got hit in the head with a purse by a woman who wanted to get into the public rest room that I was cleaning” story to share.

9. Explaining scripts can help create reasonable job accommodations

Set aside the alphabet soup of labels and educational jargon you’ve collected over the years. Turn them into conversational language (scripts) to describe your teenager’s learning style and work habits. Come up with 1-4 sentences that describe 2-3 good accommodations for how a job can be adjusted to play to your teenager’s strengths.

Here are two scripts my son and I wrote that might work for your teenager:

A. “Having Asperger’s Syndrome does affect my work style and what I’ve found is that I’m a better employee when you know what this means.”

B. “A written to do list is better for me than verbal instructions.”

As my son talked with employers, he realized that the words “Asperger’s Syndrome/autism/on the autism spectrum” themselves weren’t as important as what he said next. His follow up sentence: “Here’s what you need to know about that ….” was the point in the conversation when the person he was speaking to leaned in and paid close attention.

10. Here’s your “secret weapon”

Explaining scripts are great tools but they’re not enough if your teenager struggles with communication. The ace up your sleeve is that she can bring someone to a work related meeting to “facilitate communication,” for her. This is what’s referred to as a “reasonable accommodation.” (And, we wrote an explaining script for this!)

In the American Disabilities Act (ADA), reasonable accommodations can include “… the provision of qualified readers or interpreters, and other similar accommodations.” An interpreter is that someone who acts as the communications facilitator.

My son successfully engaged the services of a professional facilitator twice. The first time he requested one because his inability to communicate effectively at work was hampering his job performance. This is the explaining script he emailed to the HR manager: “Part of my disability has to do with how communication happens when I’m in a group of two or more people. It’s hard for me to keep track of all the conversations and be able to participate if I have to process everything I’m hearing without help. I would like to bring someone to the upcoming meeting, as an accommodation to my disability, to facilitate communication.” (The language in this script is the outcome of a conversation between an employee of the Mental Health Association and me.) The second time my son needed guidance in conversational support, he asked that same facilitator to attend a meeting with his vocational caseworker.

One day at a time is how my family built our road map. You’ll build yours the same way, maybe even faster using some of my 10 surprising things. Expect detours because detours are the spice of life! Be patient, remembering that this is not a race. Don’t ever settle for the expectations that someone else may have for your son or daughter. Believe that your teenager’s best days as an adult are still to come.

Photo Credit: Jens Schott Knudsen

Are you the parent of a graduating autistic teenager? Share with us your thoughts in the comments section below!
Hensel_PRrKathy H. Porter is a freelance writer, author and head cheerleader for her amazing son. She grabs inspiration from a background that includes 14 years of business experience and 17 years as an educator. Her latest project? Crafting work-related “explaining scripts” for autistic adults. Join her newsletter to find out when her next article will be published and to discover more useful on-the-job strategies for autistic adults. Follow her on Twitter: @kathyhporter


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