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
(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