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.