The early years before and after an autism diagnosis are busy.

Many kids nowadays – our son Hayes included – are diagnosed before age 3. Before you hear the life-changing word you may have already expected, there are loads of tests and paperwork. Hearing test. Blood tests. Written assessments from parents and daycare providers. Not to mention hours and hours of research.

After you get the diagnosis, another avalanche begins. Doctor appointments – so many doctor appointments. Genetics testing. Applying for state aid. Preschool. Therapies – a lot of therapies. Trying various medications. Continued research.

So much emphasis – absolutely appropriately – is placed on the front end of this journey. We all know how beneficial early intervention is in helping children with autism achieve their potential.

It’s an all-consuming gauntlet. A full-time job.

Then you get to kindergarten and the elementary school train begins down the track. And the therapies continue and so do the doctor appointments and pharmaceutical trial and error.

Naturally, parents like us don’t get a chance to think too deeply about the distant future. Only very recently have we been able to breathe a bit and contemplate the road ahead, imagining social scenarios and professions and living situations.

Hayes is high functioning and newly 7. He is a bright and energetic first grader, in a ‘typical’ classroom. He has mostly good days.

We’ve been told to have every hope and expectation that he will go to college and live in any setting a typical young person would be able to live in. That may or may not end up being what happens, but those are among the long-term goals we are working towards today. There is so much yet to be revealed about how he will develop over the next 11 or so years.

Down the road, if Hayes can benefit from a setting like First Place, living alongside other individuals on the spectrum, that is what we will wholeheartedly help him get access to. And we will be very grateful that a high-quality, secure option like this is available to enable independence and enrich his life.

So, while we are not yet absorbed with contemplating living situations, as the overanalyzing, fretful mother, I have thought extensively about Hayes’ future relationships. Will he have good friends? Will he have healthy romantic relationships? Will he be able to genuinely understand someone else’s inner life and be able to articulate his own? Will he be overly trusting or just cautious enough?

Life is not just food and a roof over your head. It’s all about the relationships.

And, truly, that’s what a project like First Place is all about – creating a community of people who will have fun, look after each other and live lives of meaning. It’s incredibly reassuring to us to know that communities like this are being developed now. They add to the options that Hayes can one day contemplate.

Home, sweet, home. We look forward to seeing him settled into one – wherever it may be.

Nikki Riordan’s blog, Promisingly Ominous, is partially devoted to experiences with a child on the autism spectrum. Hayes is not her son’s real name because it’s not yet his informed choice to be discussed in her writing. 

Lauren spoke at SARRC’s 15th Annual Community Breakfast in 2013 and the 1,800 people in attendance responded with a standing ovation. She’s a remarkable and courageous young woman.

I am a 28-year-old with high-functioning autism, a.k.a. Asperger’s syndrome. I have lived with my parents and sister all my life. I would like to live at First Place because I want to be independent in my life. First Place would allow me to do that and have friends over as well. That is very important for me because I am a social butterfly. I believe I can thrive and succeed more in life if I live on my own. Of course, I am going to be nervous and scared at first, but I am sure I will embrace the new life change. Living independently will also allow me to meet new people and make new friends, which is also very important to me. When I move to First Place, I will meet and get to know individuals that are on the same level on the spectrum that I am. We can understand what each other has gone through, as well as help and support each other.

Check out this film from early 2014 of Lauren talking about First Place.

Personal story shared by Lauren Heimerdinger 

The components of First Place fit together like puzzle pieces, forming a clear vision of a bright future, and the path to get there.

Live. Learn. Lead.

When you drill down to the details of First Place, breaking away the various petals of the concept and design, these are the words that stay with you. And depending on who you are, they mean different things. For some, they are ambitious destinations—goals set out for those that will very soon come to First Place. For others, for parents and siblings and family members, they are wishes—dreams that their children will become adults who are able to live fulfilling lives, able to learn new skills, and able to lead us into a future that is accepting, embracing and empowering.

More than 1.5 million Americans are living with an autism spectrum disorder. One in 68 are being diagnosed with autism and more than 500,000 U.S. children impacted by the disorder are entering adulthood this decade. When you consider these numbers, the need to develop a place that helps these individuals live and learn, a place that leads the way and carves a new approach becomes imperative.

The facts are sobering. Most individuals with autism will need some type of support throughout their lives, and the average incremental cost to support a person with autism over their lifetime is about $2.4 million.

But what if we changed that outlook, flipped it on its head, and saw things for their potential rather than their cost? What would happen then? What if we taught people how to live, gave them opportunity to learn and lead the way?

Consider the components of First Place

Our Mixed-Use Property: First Place is leveraging the benefits of a supportive urban community created and facilitated by SARRC. This urban area offers jobs, volunteers and recreational activities, continuing education, friends, and an appreciation that individuals with special needs can be productive, contributing members of society and bring out the best in all of us. It is a special community and living, learning laboratory for the residents and students at First Place, and the important work of the First Place Leadership Institute.

Live

First Place Apartments – The contemporary, 50-unit First Place Apartments will be community-connected, transit-oriented and sustained by a suite of amenities and supportive services.  Here, residents will find the comforts of home, without the distractions that can make life difficult. Residents may choose to live by themselves, with a roommate or with an aide/mentor.

Learn

First Place Transition Academy – Modeled after the celebrated Taft College Transition to Independent Living (TIL) program, founded in 1995, First Place is translating a successful rural- and community college-based program, into the fabric of the 6th largest metropolitan area in the U.S. More than 350 students have graduated from the California program and are living more independently than they and their families ever imagined. The program is also saving the state $300 million based on career-readiness and greater independence early in adult life, and the significant reduction in state-funded support services. Jeff Ross, founder and creator of the TAFT TIL program, recently retired from Taft and has relocated to Arizona to serve as the program director of First Place. He is working closely with SARRC to help the organization build its new residential services program, so SARRC may serve as the program manager and leverage its research capabilities, professional staff and clinical operations.

Lead

First Place Leadership Institute – Represented by a faculty of luminaries from across the country, the First Place Leadership Institute is set to focus on pressing concerns at both the local and national public policy levels.  Through a National Housing Action Plan, First Place is creating a location and platform for geographically and programmatically diverse organizations united in their mission of creating more housing choices for individuals with autism and related disorders.