Coming of Age with Autism

By Matthew Lager

TASH Conference – December 6, 2019

Matthew Lager is a nonspeaking individual who gave a presentation entitled “Coming of Age with Autism” at the TASH 2019 conference December in Arizona. In it he acknowledged with gratitude those that have supported him the past 18 years and describes his thoughts and mixed feelings about becoming an adult.
These are his words and for the first time in 18 years he was able to read the entire presentation aloud himself. (This video is a short excerpt from his talk. The complete written presentation is below.) 

 

Today I would like to share my thoughts about turning 18, a milestone that has both more and less significance than it should. It’s also a thank you to those in my life who have supported me and continue to motivate me to keep fighting.

Poem: My Life

Not only parents mourn

What could have been.

We too mourn our loss

Of a life we will never live.

We inherit hardship,

Struggles beyond most.

The simple truth?

Autism is a life sentence

Punishment unearned,

For us and our families.

But there is hope.

We are odd, not broken.

We have gifts, skills, value,

And we can teach the world.

Innovation, education,

and human understanding.

People choose to work

With autism, with me.

I have meaning and a role

To inspire compassion,

I choose to emulate

I am choosing to teach.

I will be my best self

By helping the world.

 

Turning 18

This year, my parents gave me a beautiful 18th birthday gift.

They brought together my teachers, therapists, tutors, friends and family to surprise me with a birthday party.

There was the kind-hearted professional from Infants and Toddlers who answered my mom’s phone call New Year’s Eve 2002, the day I was diagnosed with autism; There was my dedicated and creative preschool teacher who gave me a safe and non-judgmental space to be me; my first devoted and tireless Speech Pathologist who never gave up and was always searching for new ways to help me communicate; my beloved camp counselors, 1 to 1 therapists and babysitters, all of whom were my friends when I didn’t have any. They supported me, laughed at my knock-knock jokes, accompanied me on camping trips and taught me how to swim.

There was my dedicated piano teacher who patiently worked with me over (so far) 999 lessons to help me develop my musical voice, long before I could communicate my thoughts in words.

There were teachers and school administrators from my current school — the ones who saw beyond my unruly body and took a chance on me when no one else would and gave me access to a real education. There were my warrior friends and their parents who inspire me every day with their tenacity, focus, wit and endurance. Finally, my loving family who have always fought for me, encouraged me to dream and helped me break down barriers.

This was a day I will cherish forever.

Reflections: Turning 18

These were all people who loved me and knew me best. They all guided me at some point and are permanently etched in my memory. Each face or voice a time of my life. Some shining stars in a dark time or friends I never officially conversed with. That party reminded me of all the good in my life regardless of the assumptions about me or the limitations from my autism. I have met wonderful, caring people who did their best and wanted the best for me. I was instantly overwhelmed by love from and for all the guests.

Now that I’m an adult, I can reflect on how these people guided me and believed in me.

So, while my turning 18 was filled with excitement, it was sprinkled with some apprehension. I think there is an ‘uh oh’ realization that you are legally an adult. The definition of being an adult is somewhat of a mystery to me. For others, perhaps, there is a sense of freedom and independence. I’m sure I feel all the same emotions and thoughts, but I don’t feel free or independent. I’m always excited to have a birthday but I wouldn’t say that I feel close to being an adult.

For me it’s a false start. I wonder what could have been if only I had found a method of communication earlier, had an equal education, and had greater motor sensory awareness–could it have gotten me on track, to be more like my neuro-typical peers? My age is legally significant, but otherwise, for me it is just another year.

Even though we don’t choose certain circumstances or life events, we have a choice of how we look at and react to a situation. While I didn’t choose to have autism, I try to look at my situation positively. I make a choice every day to not give up and to keep pushing forward.

What’s next: Signing over my Rights

For most, 18 means graduation, adulthood, and college. It means answering questions like: Are you excited to finish High School? Where are you going to college? How do you feel about leaving your friends?

I turned 18 and had to answer questions to prove my competency. I signed Power of Attorney forms enabling my parents to still be responsible for me. There is something devastatingly real about completing the interviews for this and signing a legal document surrendering most of my rights.

My lawyer was kind and understanding but I know at some level answering these questions means society assumes I am not competent. After I left my last meeting with the lawyer, I went home and filled out an application for college. What a contradiction.

I am particularly reflective of this milestone year as I ponder what comes next.

This presentation has been difficult to write because while I want to be positive and hopeful, I also need to be real. I can’t shake this profound disappointment. I’m an adult, but not. I’m a college student, but not. I struggle with defining the current in-between state that I am in.

What’s Next: Adulthood and Advocacy

To my inner advocate

Breathe. Inhale, exhale.

Filter out the noise,

Sense the good intent,

Reword the negatives,

Support the positives,

Create opportunities.

Clear a path, even small,

To widen behind you.

Advocacy will always be a part of my life. I was recently asked if as an adult did I expect my role to change. The answer is no. In fact, I think it’s needed at this stage more than ever. I am at the front end of the wave of those born with autism in the last 25 years. Ready or not world we are coming and we want to be included.

My advocacy work will continue to focus on people trapped like me, those who speak or not. Hearing just one adult change the way they interact with someone with autism and to change their assumptions about us is all the motivation I need. I want to provide evidence against the accepted mindset of intellectual or developmental disability and show how human I am, we are. I have a profound disability, but in most areas, I am highly intelligent.

I will keep advocating until we are noticed as people who are greater than the burden our disability can bring. We want to be treated with respect. I want to be more than the person who brings profound worry to those around me.

My hope is that one day I will be asked to speak about something other than having and living with a disability. When that happens, I will know that I was able to get the education I want, the job I have the credentials for and the life experience shared by all. When that happens, I will give a nod to inclusion as I deliver a talk about a subject in which I will have expertise.

What’s next: My roadmap

Talking about the future can be like planning a trip. You can choose where you want to go and the sights you want to see. Getting yourself on the road–that’s where things can get bumpy

Many call the transition from high school with an IEP to adulthood like “falling off a cliff”. There is no roadmap for this transition and I know it will be bumpy. While that makes me very nervous I take solace in knowing I have a strong support network. I hope that I can manage my way through my own obstacles to a life that is fulfilling.

My roadmap includes eventually graduating from college with a degree and finding a job that I love where I’m treated as an equal. I hope that I can support myself at least partially to feel more independent.

I hope to always maintain close relationships with family and friends. I want to continue traveling and exploring.

I am determined to make the road easier for those with autism younger than I am. I want them to be seen as competent interesting people who happen to have autism rather than viewed as I was — as someone who has limited cognitive functioning, emotional awareness with the interests of a preschooler. This is the crushing, spirit killing reality that many of us with non-speaking autism face multiple times a day. I want to help change the misconceptions so others face fewer indignities.

I am trying to live in the moment and take a more relaxed view of the future. There is such a huge rush to always get to what’s next. My “what’s next” is unknown and I am uncertain what my future will be. I do know that it will include many highs and many lows. I hope the first 18 years have given me the strength and experience to weather the storm.

My friends, teachers and family were there for me at my party. And I know they will be there for me along the road.

I am an outlier, but I am not alone.

In closing…

Closing –Priority 18

Priority 18

Thank you.

Thank you for everything.

Today I am an adult, but not much else is different.

I am Matthew, and I am proud of who I am.

Proud to be your son, student, friend, and teacher.

To be kind, caring, and loving.

Life is hard and we all know our struggles,

But that’s why we have each other.

We choose how we live life,

And I look at my life as I become an adult,

And I smile.

Gentle, charismatic.

To see how I make the world better

Because I make you smile.

Thank you for choosing to be in my life.

I am me because of you,

And I am happy.

 

Posted By on Tuesday, February 4th, 2020 in Advocacy,Education,Families,Nonspeakers,S2C

2 responses to “Coming of Age”

  1. Patricia Payne says:

    I want to thank you for sharing your story. You are an amazing person, no mater what our challenges are in life we never give up! I see children at my school with autism & wounder what they are thinking, now I know what they might be thinking. All of us just want the same thing respect, love & joy in our life! Challenges are some times hard that’s why they are called challenges & if we all live our life to the fullest our world would be a happier place to live.
    I to have challenges in life I have lived with moderate to severe chronic pain for over 30 years, I have learnt to live with with it. Some days are easier than other but I have pain every day, but I live my life to the fullest & thank GOD for every blessing each day!
    May we all thank GODS blessinds & every day he gives us!

    Patricia Payne

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