10 Questions to Ask in Preparation for Adulthood of Neurodiverse Citizens

Here are the top 10 questions I’d recommend you ask yourselves as a family. And that includes making sure the teen or adult self-advocate is involved as much as possible in these conversations. The questions below may need to be adjusted depending on the age or understanding of each self-advocate. But an inclusive planning process is a family conversation that should include those involved now and later, while especially providing the self-advocate a sense of empowerment and ownership over his/her own life. This is called self-determination and is a cornerstone to successful transition into adult life.

Mari-Anne has held marketing roles at top global organizations for over 30 years and is currently Chief Marketing & Strategy Officer at Green Hasson Janks, an LA based business advisory firm. She and her husband Eddie are parents to Liam, and she has been active in the community in the areas of disability and autism advocacy, and the advancement of jobs, housing and self-determination for adults.

Mari-Anne is currently Vice President of the Autism Society of Los Angeles board of directors. She is also Chairman of the Community Advisory Council of the Southwest Special Education Local Planning Area (SW SELPA) in Los Angeles. Mari-Anne is the co-author of the Amazon bestselling book, Putting the Profit in Nonprofit, which provides insights to assist nonprofits to increase their impact and maximize their outcomes.

It’s not uncommon today for kids to graduate high school, go off to college with great fanfare and parents’ tears, only to return home again to spend their 20s figuring out what they want to do when they grow up. We’ve become used to this new norm, and don’t particularly judge families who support delayed independence of their young adult sons and daughters. What’s the rush? Eventually they will find their path and embark on their adult, independent life.

But for autistic teens and young adults the path is much less clear, and the uncertainty can create intense stress for them and their families. Is college in their future? Will they instead graduate high school and find a good “day program”? Will the available program advance their goals toward life and job skills, self-determination and self-advocacy? Will they eventually get to live more independently? If so, what will it look like? These are challenging universal questions for self advocates and their families, with answers that vary dramatically depending on the individuals, and actually the city of residence. Funding differs state by state, and most communities do not provide adequate programs and services for adults.

And then there is the elephant in every room in every autism home. The driving concern of every parent that begins at diagnosis: who will care for my son or daughter when I’m no longer around? Where will s/he live, and with whom?

As someone who has spent the better part of two decades helping to pioneer autism programs and policies, I’d humbly suggest we’ve been asking the wrong questions. If we wait until we’re gone for our loved ones to begin their journey to independence, indeed whom will be the ones left behind to help shepherd that path?

There are many examples of men and women with developmental disabilities who have aged at home alongside their parents. When their parents become ill, or pass away, these neurodiverse citizens are forced to begin a new way of living at an older age, which will likely be a crisis placement and not a steady shift, while also grieving the loss of their beloved parents. If a plan has not been put in place, it’s often left to siblings or other family members to pick up the pieces. And if they have not been involved enough to fully understand the needs and wishes of the self-advocate now in their care, it’s not exactly the best recipe for success or happiness.

Here are the top 10 questions I’d recommend you ask yourselves as a family. And that includes making sure the teen or adult self-advocate is involved as much as possible in these conversations. The questions below may need to be adjusted depending on the age or understanding of each self-advocate. But an inclusive planning process is a family conversation that should include those involved now and later, while especially providing the self-advocate a sense of empowerment and ownership over his/her own life. This is called self-determination and is a cornerstone to successful transition into adult life.

Q&A

How Early Should We Start Thinking About Transition To Adulthood?

The honest answer is: today. Ideally, I encourage families to begin this as soon as they can after they digest the diagnosis. (I’m not kidding.) Whatever age your child is, start now. And it’s never too late. But start today.

Early in childhood, you will have no blessed idea what adulthood will eventually look like. We don’t have a crystal ball. That’s ok! That doesn’t mean we get to delay the process of planning for the future. (Think of it this way: you may not know what your typical kid will want to major in at college, but I’m guessing you’ll start a college fund anyway.)

We thought the best we could hope for our son, Liam, was to minimize his self-injury and keep him safe in a very controlled environment. His challenges were extreme. But today at 21, he lives in his own apartment with a roommate, has a job, volunteers, has a vibrant social life and loves to travel. He has  Supported Living staff that works for him, and assists his needs. He is incredibly independent, nonetheless. We couldn’t possibly have guessed he’d end up here. But we planned for it.

Rule of thumb: hope for the best, plan for the worst.

That means you assume your loved one will achieve great strides, and plan accordingly; but you also carve a path in the interim that will scaffold a Plan B, C and maybe D.. Keep the bar high on where you are heading, and in the meantime build the skills needed real-time to get there. The timeline may be slow, or fast. Some skills take longer than others. But keep your eye on the prize. Readjust as needed as you go along.

If your son or daughter is already an adult, it’s not too late by any means! We are all lifelong learners. But do start now to consider a transition to an increasingly more independent life for him or her while you have the energy to be a guide. More on that below.

Where Do We Start?

You start right where you are: at home. If you are like me, you are tired and worn out from years of struggle to get services and make progress. I get it. So what you won’t like hearing is that even the BEST school or program cannot successfully get your kid ready for adulthood. The learning has to be consistent, sustained and meaningful, and therefore it has to be based in the home. Parents who ask me for coaching end up hating me when they hear this.

We fantasize there is a magical answer/program/therapist who will have all the answers. There isn’t. It’s homework, just like it is with typical kids. Parents of typical kids cannot outsource their involvement after the school day is over. There’s academic homework, tutoring and enrichment skills parents need to participate in. The same is true with autism families. We need to understand the goals in the classroom. We need to implement the approaches that work, and build upon them at home. We need to flag what isn’t working, and what isn’t being generalized at home and in the community. We need to identify when an approach is harming one’s physical or mental well being. We slog through the process, skill by skill, until we see some real strides.

Here is the difference for autism families: most typical kids I know get a free pass on home “life” skills in lieu of a focus on academics. Mom says, “Do your homework and I’ll make your bed and do your laundry!” But even if your autistic kid has an academic focus, you cannot bypass the life skills part. My adult autistic friends who weren’t encouraged to cook, clean and socialize a lot tell me they regret it. They may have graduated from college and earned a degree, but often lack the ability to be more independent and enjoy a well-rounded adult experience. Many have a piece of paper that says they went to college, but struggle with adult skills required to hold down a job, or the social skills to have rich friendships or romance.

Bottom line: whether the school years focus on life skills or academics, we need to raise citizens who have a real, authentic and contributing role in their homes and communities.

What Skills Should We Begin Emphasizing To Create A Path To Adulthood?

There isn’t one single place to start, except start exactly where you are today. If you haven’t started early, just start now. The best place to start is to ask “What am I doing today for my loved one that s/he can do for herself/himself?”. For example, if you have a child who cannot do laundry, can she pour the detergent? Can he pull the clothes from the washer and throw them into the dryer? Push the start button? Many of these micro-activities quickly build into chained steps and before you know it, s/he’s doing the laundry! Start simple, and create small victories. Most of all make it fun! Your child will respond to your enthusiasm and encouragement. And when you do the tasks together, it’s an opportunity to create that safe space for eventual success.

Occupational therapists are trained to take an activity and break it into many discrete tasks, as well as  find adaptive equipment or technology that can help. If you have an OT on your child’s team, ask for guidance. Make a list of what you may be doing today, simply for convenience or speed, which your child is quite able to help with. Are you tying his shoe because he’s slow, and you’re in a hurry, or because he cannot do it? Are you making the bed or shaving his face because you want it to look a certain way, or because he cannot assist you? We need to reframe our priorities, slow down, and begin looking at each of these moments as building blocks for the big picture of adulthood. This is your new “homework” assignment: slow down and share the load with your son or daughter. Eventually you will begin to love sharing chores and having them do more on their own.

Hot tip: one of the best pieces of advice I got was a mom who confessed she washed her son’s hair even though he could do it himself because he didn’t get all the soap out 100%. But eventually the mom realized her son was better off with slightly imperfect hair, and higher self-esteem by owning his own grooming. This is a common mistake we make. But we need to drop the perfectionism, hand over the reins and back off so our self-advocates can gain mastery over their lives. Eventually the shampooing skills perfect over time, with practice… and maybe explore dry shampoo too!

But If I Love Being A “Good” Parent, Why Shouldn’t I Just Do As Much As I Can For Him/Her?

Because you aren’t raising an orchid, you’re raising a citizen. I love the saying by Jonas Salk: “Good parents give their children Roots and Wings. Roots to know where home is, Wings to fly away and exercise what’s been taught them.”

Our true job isn’t sustained caregiving; instead, our job is to shepherd a way to greater independence, self-esteem and a place in the community. Ideally, all parents of all kids have the job to give wings to the citizens of the world.

So citizenship starts at home, and includes activities that serve the home community. We often call those activities “chores”, and that approach later leads to jobs and volunteer service outside the home in the broader community. If we can do that, we’ve really earned our “good parent” status.

What are the right IEP (or IPP) goals we should be including?

The right IEP goals will be those that advance your child’s citizenship, a functional adulthood and a higher quality of life. Each and every IEP goal that is written, you and the IEP team should be asking “How will this goal assist this student in having a higher quality adulthood?” If you cannot effectively answer that question, then it’s the wrong goal.

Often goals are written so we (the parent/teacher/school) can feel good about a math or reading achievement. Fair enough! But if that math goal will never assist your child’s functioning in adulthood, scrap it or adjust it. If that reading approach won’t lead to independence and real communication abilities, reconsider the approach. (Can you recall any classes you took that provided skills you’ll never use? I can. Don’t waste your child’s precious time, nor your resources.)

When Liam was in high school, he had a math goal to learn how to round up when adding or subtracting. We’d decided the important skill he needed was to be able to properly have a money exchange to shop as an adult, but it didn’t need to be exact. After all, in the age of debit and credit cards, how many of us are counting coins when we shop? Then he got a job in a busy restaurant at age 16. During an observation to assess progress, lo and behold, we noticed he was at the cash register taking food orders! Even though the register would tell him the exact amount of change needed, if he couldn’t provide the proper change with the right coins, he’d never succeed. So we quickly adjusted the IEP goal to be more aggressive with his math skills.

And it worked. In that case, we had underestimated the functionality needed for job success. And to be honest, we underestimated his ability to be successful in that kind of job. He ended up taking orders, making barista drinks, packing up takeaway orders, and interacting with customers. We initially thought the measure of success was a job to sweep and wash windows. It’s a common mistake to underestimate our self-advocates; I’m embarrassed to admit I did just that. Today, Liam is not only able to handle all these types of roles, but 5 years later he can help train other friends with disabilities as a peer job coach.

How do IEP (or IPP) goals lead to job skills?

This is a complicated question that could be an entire article (or book!) on it’s own. But here are a few things to consider. By starting the citizenship concept at home with chores and increased responsibilities, you’ve already started the path to job skills.  Keep building on them. At school, see how IEP goals can be developed to identify roles within the school community that can have relatable job titles.

For example, Liam’s IEP team suggested he could be responsible over time to become the school’s “Purchasing Manager”, based on his keen computer skills. Frankly, based on his current levels at the time, they may as well have said they thought he could fly to the moon and it would have made as much sense to me. I didn’t have the vision they did. They saw someone with a passion for detail, an ability to track data, with a remarkable memory. I saw someone who liked to surf YouTube and watch Sesame Street videos endlessly.

But they were right! Not right away, but over time, step by step, Liam eventually managed a purchasing budget, learned to take inventory of goods in an Excel spreadsheet, compare prices, shop and stock the goods. It was amazing to me! But just like the laundry example, they broke a big goal into very small parts, and over time (a long time) they created a chain, where eventually Liam could own that job with a blindfold on.

It took two years to get there. But if we never set the (seemingly unachievable!) goal, layered skill upon skill, and kept at it, he’d never know how. And today that skill translates into a masterful ability for him to take inventory at home of what he needs to purchase, create a list, compare prices, shop and stock his goods in his apartment. And the outcomes that resulted from that IEP goal were functional, pre-vocational, enhanced his quality of life and furthered his independence. That was a good IEP goal!

Why this matters: research shows if an autistic student can get a job in high school, they have a 90% rate of employment after high school! So prioritizing goals and skills that will lead to job opportunities before high school graduation can be a helpful factor in future success.

One final word on the IEP: self-advocacy. Your student should be attending his/her own IEP. By age 16 or earlier, s/he should have a key role in communicating likes, dislikes, desired outcomes and provide feedback on IEP goals. (Maybe you can start with your student giving a thumbs up or down on each goal. Whatever creates a sense of involvement, do it.) By doing this, you are once again supporting citizenship and self-determination. It may take a lot of planning and practice to get there, but you can make participating in the IEP an IEP goal! Liam practiced for weeks before his IEP to prepare what he wanted to say. By senior year, he was presenting PowerPoint slide presentations to the team, and giving us real insights into his vision and preferences for his future.

How can we advance job skills beyond IEP (or IPP) goals?

Keeping with the citizenship model, it’s been proven that volunteerism is a powerful way to advance vocational skills. (True by the way for anyone, autistic or not.) The advantages are many. One can build skills by volunteering without the heightened pressure of a paid job. It’s a great way to practice skills in a safe environment. Also, if the volunteer job is with a nonprofit, there tends to be a more flexible mindset with those organizations that are specifically designed to give back to the community. The pace may be less demanding, making it more suited for someone who may have a slower processing speed.

Liam has volunteered for Meals on Wheels, an organization that does amazing work bringing food to the elderly. There are roles to help with packaging the meals, and there are roles to help deliver the meals to the clients. The delivery role is important too because it provides much needed human interaction to folks who may not get to see many other people during their normal day. Great practice for my son to expand his conversation skills and give back to others who may need company and a cheerful hello.

Always start with the self-advocate’s input: their interests, passions, suitable activities, and preferred environments. For example, if someone loves animals and the outdoors, can you explore a volunteer job dog walking for an animal shelter? That is a real skill that can lead to a real job. If someone dislikes the outdoors, but loves environments that are orderly and quiet, can you seek a volunteer role at a local library? Again, acquiring skills that can lead to real paid work.

Bottom line: identify interests and preferences, seek a matching role in the volunteer community, build skills and esteem, and continue to expand the skill set. Continually monitor progress, and layer on new skills so there is progressive growth. Now you are ready to consider how to transform those skills to a paying job!

How do we find a job that is suitable for our son or daughter?

There is no easy or single answer for this. What I will say is this: I had many, many jobs before I found my calling in life. Most people do. And most of us learn what we want to do by eliminating what we don’t want to do. In short: try lots of stuff. 

In college, I had 3 internships: 1. In fashion, 2. In law, and 3. In journalism. (Yeah, I was confused.) So I ended up in finance! Makes sense? Of course not. I was in my 20s. Who knows what they want in their 20s? Very few people do. Today I’m in a profession and a job I love. But I kissed a lot of frogs along the way. The same is true for our self-advocates.

Consider the potential skills to be earned rather than a particular job or title. Accumulate experiences that build confidence, responsibility and keep expanding the comfort zone.  

Find out what job programs and job coaching are available near you. But don’t be discouraged if you find you may have to create opportunities rather than find one through a program. Most of the self-advocates I know are in jobs that were hand developed by a family member or individual word of mouth.

Most autism employers that get media coverage involve jobs in technology for employees with advanced computer skills, leaving many people to think autistics are all brilliant in coding. But what about all our self-advocates who don’t fit that mold? (Like the other 90%+?) My son got a job at our local Petco, where he was given a great opportunity to help care for the cats up for adoption. He’s a natural at it, because part of his citizenship at home was helping to care for our cat, Figaro, and his frog, Kermit. Liam had a string of pets throughout his childhood, and the job of pet care in our home was his responsibility. Bingo: a job skill!

Get it? There are lots of ways to create jobs, but it may take some exploration and creativity. Liam isn’t yet able to work a 40-hour workweek. But he can work a few hours at a stretch. So finding those part-time opportunities has been the goal. And once you get started, you actually see opportunities everywhere. The local farmers market is looking for help! The local church needs a part-time assistant to do light chores! The local landscaper wants a part time assistant during busy season! Don’t be afraid to try, gain experience, and try again.

What is the right housing model for my son or daughter?

Autism Housing Network has extensive tools to evaluate and consider the various models available to adults with disabilities. This virtual tour is an excellent overview of the pros and cons of different options, and includes information on the financial considerations as well:

http://www.autismhousingnetwork.org/education/virtual-tour-housing-options/

It’s important to get educated about all the options in order to match them against each self-advocates wishes and abilities. The key is to emphasize choice, and maximize the self-determination and independence, which will provide the best possible quality of life. Being a citizen in one’s community is the ultimate gift for each of us.

My husband and I didn’t think we’d have to explore housing options for our son until after he was 22 years old and graduated from school. But he surprised us when at 19 he let us know he wanted to live more independently and asked us to help him begin his new life in his own home. Suddenly we were on a fast track in the housing journey. We visited many different types of housing models with Liam around the country so he could see firsthand what choices he had.

To gain practice in advance of moving into his own home, Liam took advantage of weeklong supervised travel camps with peers to experience being more independent without mom and dad. At first it was a bit scary for us all, but very soon he fell in love with the ability to be more and more responsible as a young man doing things independently from his parents. We practiced too! Our “practice” included a process of learning how to get more comfortable that those roots we had provided for 20 years must now lead him to sprout the wings transporting Liam to his own home.

Liam chose to live in an apartment with a roommate. His home is centrally located in a friendly village that has many shops, restaurants, banks, and post office within walking distance. He has a vibrant social life with his circle of friends. A great Supported Living staff is trained to balance assisting Liam as needed without hampering his independence. We are fully involved in Liam’s life and adjusting to being “empty nesters” sooner than expected.

I won’t lie: it’s been a big adjustment for us all. In some ways it’s more challenging being an involved parent while living separately. Its taking lots of practice, trial and error to learn how we best support Liam and his wishes for self-determination after decades of Liam being the center of our family’s focus in the home. Liam is not the only one transitioning – we are too. One of the hardest parts of this journey for parents is learning how to begin to identify and nurture the village that will help to support their loved one’s journey into adulthood.

What will happen when I’m gone?

An important consideration is to make sure there is a village involved in each self-advocate’s future to prepare for the inevitable changes that will occur as we all age. No one person, or a few family members, should be the only ones involved in the pathway to adulthood. Why? Because a variety of loved ones and friends can play different roles, and have contributions to make toward the quality life of the self-advocate.

It’s highly recommended to conduct a Person-Centered Plan (PCP). There are many good sites and resources you can find that describe a PCP, and how to get maximum benefit.

In short, a PCP is described by Pacer.org as “an ongoing problem-solving process used to help people with disabilities plan for their future. In person centered planning, groups of people focus on an individual and that person’s vision of what they would like to do in the future. This “person-centered” team meets to identify opportunities for the focus person to develop personal relationships, participate in their community, increase control over their own lives, and develop the skills and abilities needed to achieve these goals.”

Pacer.org further describes the purpose as:

  • To look at each individual in a unique way
  • To assist the focus person in gaining control over their own life
  • To increase opportunities for participation in the community
  • To recognize individual desires, interests, and dreams
  • Through team effort, develop a plan to turn dreams into reality

A PCP puts the self-advocate at the center of the process, and is ideally an ongoing tool to evaluate progress throughout his or her lifetime. And that is the magic of the plan – it will change and evolve over the lifetime of the self-advocate. But the “village” that s/he selects to participate in the plan will be there along the way to help support the evolving path to success. The plan will include what “success” would be for that self-advocate. What do I like/dislike? Where do I want to work, live, socialize? Ultimately, the plan defines happiness for that individual.

I think of it like the bumpers in a bowling alley. As the ball is guided along, the bumpers keep the ball from going off course. Similarly, the documented, (yes, written down on paper) PCP is a way to keep the wishes, dreams and desires of the self-advocate from going off course, and eventually help knock all those pins down that may stand in the way of winning each frame. By planning for the future, with parents collaborating as part of that larger village, the fear parents have of being the only ones looking out for the self-advocate’s success and happiness can be minimized. We aren’t in it alone! And neither is s/he, your son or daughter, alone, even after you are gone.

If these 10 FAQs to Autism Adulthood have left your head spinning, you are quite normal. Each question can be it’s own article or book. Don’t try to tackle all of it at once. If this were an easy process, we’d all have it figured out by now. But after you digest this, go back and pick one thing you can start doing tomorrow that will advance the journey to adulthood or independence just one step further. And know you aren’t alone.

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