Tomorrow Is Too Long to Wait for Inclusion

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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  • Great tips! I didn’t know until my 30s that I was autistic, so my early job experiences were pretty wild and in some cases, left me clinically depressed. A lot more can be achieved with proper supports. I am happy to be “out” at my current workplace and for me, it makes all the difference. I would not hesitate to disclose again if I change jobs.
    I will keep this list saved to help my son when he gets to that age.

    • “Proper supports” make a huge difference, don’t they? It’s great that you found what works for you and, that you’ll be able to use some of my strategies to help your son means the world to me. If I’ve learned nothing else in my parenting journey, it’s that we gain so much when we reach out to help each other.

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  • PK

    This was a really strong article. After having read a “personal coach”‘s horribly researched and insulting article proporting to be helpful, this is a huge breath of fresh air and EVERY POINT is useful. Thank you.

    • Thank you SO much for your feedback. It was important to “speak what I knew from personal experience” and to find a way to turn that into helpful information for other parents. What I’m so proud about is that my son looked over my shoulder as I wrote this and gave it his seal of approval.

  • Carmen Gretton

    Thank you for this, while we have a long way to go before my son graduates it is always great to prepare. I am going to copy this and put it in a file so I can access it when I need it!

    • I surely hope it helps you. The landscape changes so quickly that by the time your son graduates, there will be a lot more information for you. For the longest time, Find a local support group – in the short time I’ve been attending meetings for parents, I’ve found some amazing local resources I wouldn’t have found any other way. Please stay in touch with me; I’d love to hear your stories. 🙂

  • Autism Mom

    This is brilliant, thank you for compiling this list! There are things on this list I can tailor and use now while he is still in school – such as life skills, communication skills, etc. Very helpful!

    • I’m so glad this helps you. If I’d known about just three of these things back in 2005, I honestly believe I would have taken 5 years off of my learning curve for my son’s transition years.

  • Rather than using the term “autistic graduate” I believe a more positive and modern way of defining the intended subjects would be to say “graduate with an autism diagnosis” or “young adult with ASD”.

    As I’ve always explained to the young people with an ASD diagnosis who I’ve worked with-Austism, Aspergers,etc is the way your brain works it’s not who you are.

    When we define people by their disability we place an identity on them that defines them by their challenges, rather than looking at them as a whole person.

    @ryanwexelblatt

    • You’ve made a valid and important point. Although I can’t speak for the editor who changed the original title of my blog post from ” … Parent of an Autistic (ASD) Teenager Graduating from High School …” (which still goes awry of your point, to ” … Autistic Grads…”.

      I have to say that “graduates who have an autism diagnosis” is one I’ll keep in mind for the future.

    • Tim Villegas

      Ryan,

      We make it a point to use it both ways… “autistic person” or “person with autism”. There is much debate within the autism community and I think it has more to do with respect than anything else. I know many autistic adults who prefer to be called “autistic” because they see it as part of their identity. See this: http://autisticadvocacy.org/identity-first-language/

      Thanks for your comment and kind words about Kathy’s post.

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  • Georgia

    Hello Kathy – Thank you for sharing your thoughts and experiences with your son. As a parent of a child living with a disability, I highly value the input of other parents’ experiences and knowledge. It’s the best way for our community to move forward. Even though my son is not living with Autism, the article is very helpful for anyone living with a disability. In addition, it brings up a good point that our individuals and their supports have to start planning even earlier for transition. The State and Federal government are making changes that will encourage our individuals to work out in the community. I love the idea, however feel that our individuals are not getting the support early enough to have a good foundation moving into transition. This really needs to start in elementary, middle and high school. We need the think about transition at our CSE meetings and have goals that will support a successful transition into the traditional work force. Again, I appreciate you sharing.

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  • Joanne Whitlock

    Wow, loved this post. I was reading out of curiosity before I forwarded it to a friend and there were lots of ideas that resonate with me and my audience – people who have English as a second language. I never realised the cross over before. I will be looking here for even more ideas in the future. Let me know if you want to talk about communication challenges and breaking them down into manageable steps.

  • Brenda Spandrio

    I don’t have an autistic child (at least I don’t think I do), but I do have a “challenging” one. I think the points you share could benefit any family, no matter how “normal” they may be. Perhaps the most important points in all of this are the ones about communication. All of us could do better at clarifying and explaining. I really appreciated the part where your son learned to say: “Here’s what you need to know about that…” I think I need to use that sentence more in my conversations, especially with my husband!

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