There have been extensive studies conducted over the years involving people with autism, namely young men, and their relationships with their mothers. These studies often show that these young men tend to cling to their mothers throughout the course of their lives for a number of reasons. Whether it’s the desire to feel loved, the need for safety, fear of the unknown or another factor of their life that the person believes only the mother can fulfill, it gets to the point where the young men require their mother’s approval to make decisions about their life and/or to take action on those decisions. In short, young people with autism are asking permission from others to live out their own lives. As a result, these young men often have difficulty letting go of their approver(s) and discovering their own decision-making power. I am living proof of this…
The other side of the coin that doesn’t appear to have been studied as extensively is how clingy mothers are, or at the very least can be, and how this can be more hindering than helping to the growth of a young person with autism. I don’t have to be a parent to say that having a son/daughter with autism drastically changes your life. Once a parent has this epiphany, however, the negative, long-term assumptions and associations begin to manifest. For instance:
“My kid will never live on his/her own.”
“My kid doesn’t know what’s best for him/her.”
“My kid will never be understood by others.”
“My kid is so stubborn.”
“My kid can’t…”
Over the course of my life, I, too, have had my potential and capabilities underestimated and my feelings, wants and needs discounted and even dismissed completely…silenced by the very person(s) I had entrusted to help me bring out my best self. As a result, I began to feel self-doubt constantly, questioned my own instincts on a regular basis and kept quiet when I should have spoken up! I became increasingly unhappy with myself and my circumstances thinking there was no way out and that the only way to be free was to go through “the gatekeeper” that was my mother.
Then, after a number of failed relationships, jobs and other endeavors, many at the suggestion of my mother, I had my own epiphany…I am NOT in control of my mother’s thoughts and actions…but I AM in control of MY OWN thoughts and actions! I finally acknowledged and came to accept that I could not change a person and my attempts to do so would ultimately eat away at MY happiness. I realized I had to do what was right FOR ME regardless of whether or not my mother approved. She was not “the gatekeeper”…I WAS…and I had imprisoned myself for too long while holding the key the entire time!
This, along with several other realizations, including the below statements to my mother, enabled me to find my voice, helped me muster up the courage to stand up to her and find my freedom to live the life that I wanted for myself.
1. “You may be my greatest ally,…but you may also be my greatest hindrance.”
For those that may not be familiar, an ‘ally’ is a friend, while a ‘hindrance’ is an obstacle. This was one of my earliest realizations growing up that would ultimately help me conclude that “Mother knows best” is not always the case. I was my mother’s first child and since I was diagnosed with autism at age 13, my mother assured me that she was and would always be my number one ally. As a result, I believed her word was law and I wouldn’t question what she had to say or what action she wanted to take…even if it really wasn’t what I felt or wanted. While she was right in many instances, as life unfolded and I realized that my mother could be, and in certain critical cases was, wrong did I begin to question that maybe she no longer knew what was best for me. I also found out that I had a mind of my own, had my own feelings, wants and needs, that it was all right to think for myself and my mother could actually be playing a direct role in delaying or destroying my future; hence, the term “hindrance.”
Parental involvement does play a vital role in a child’s growth. Parents of young people with autism want what’s best for their young people and often set out to accomplish tasks with good intentions. Whether it’s setting high expectations, establishing goals and deadlines, and overseeing progress, these steps are a good start and provide a solid foundation to planning a better future for the young person. What the parents and other allies may have a difficult time acknowledging or accepting is that the young person has free will and has the capability and capacity to think and feel for themselves by themselves. When somebody is deemed nonverbal or unable to effectively state their wants and needs (“I don’t know…”) do allies start guessing, assuming and underestimating. These are steps in the WRONG direction and, in that moment, you have detoured onto the path to becoming a hindrance rather than an ally. Do what you must to support the needs and wants of your young person, first and foremost, as opposed to yours. Please keep reading for more on how to find out what your young person really wants and needs.
2. “I will be the one that determines my definition of ‘success’…not you.”
At this point in time of my personal growth, I had discovered that my feelings, wants and needs had value, and I had to make them matter to myself and others. As a result, I began making more “I statements.” These were statements beginning with “I” as opposed to “You.” I learned that beginning a sentence with “You” makes the words that follow about the other person, puts the blame on them (in the case of an argument or disagreement) and takes away my power. Beginning a sentence with “I,” on the other hand, validated and gave me ownership of my feelings, wants and needs, and gave me the power to begin to create the change that I wanted. Once I realized that I had the power, I began to set and see through the goals of my choosing and really felt the feelings of success that I HAD CREATED!
Each and every one of us has our own definitions of “success.” Whether it’s getting an “A” on a test, getting first place in a contest, getting an educational degree or earning a lot of money, these are just a few examples. When autism is part of your life, “success” could be something along the lines of “getting through the day without a meltdown,” “finally asking that girl I like out,” “finding work for the first time,” “saying ‘I love you’ to my mother” or something else others might deem “simple.” Rather than hold young people with autism to the same standards or definition of “success” as their peers or as allies see fit, allies of young people with autism need to make more effort to find out what their young person with autism deems “success” and acknowledge and celebrate the little wins. After all, bringing up one small victory (such as showing up and finishing the race) can help overcome a lifetime of defeat (feelings of rejection, depression, hopelessness, etc. that people with autism know all too well).
3. “I release myself from any further obligation to please you.”
This was one of my biggest breakthroughs! After saying this to my mother, I actually felt physically lighter…like being underwater and finally able to breathe again! I’d finally put the key to my own happiness into the padlock, turned it and got myself out of the chains that had bound me to her (figuratively, of course). Up to this point, I had been a “yes man” and/or a “momma’s boy” thinking it was my job to make my mother happy. As a result, I became increasingly unhappy in my quest to make my mother, and others for that matter, happy. Guess what? The only person whose happiness I’m in charge of…is MY OWN! Living my life to please others had only made things worse for me. I had finally given myself permission to do what I knew was right for myself and not feel guilty for looking out for myself and doing what makes ME happy.
For the allies of young people with autism, speaking from experience, one of the reasons that people with autism may feel exhaustion, frustration, anxiety, etc. is the false pretense that the young person needs to make you happy and satisfy your demands, however realistic or unrealistic they might be. It’s up to you to be clear to your young person(s) that it is NOT their job to make you happy…it is yours. You owe it to yourself and to your young person(s) to release them from that self-imposed burden and give them permission to pursue and experience the happiness that both of you desire. It will be like the weight of the world has been lifted from their shoulders and they can be on the path to becoming their best self which is what you want and have wanted for them from the beginning, right? I hope you do what you need to do to find your own happiness if you haven’t already done so.
4. “I’m getting out of my own way…I suggest you do the same.”
This one actually made me cry after saying it to her over the phone and then hanging up on her. The tears were not of sadness though…they were of joy. The feelings of lightness and freedom I was experiencing had grown exponentially stronger and I felt like I could conquer the world at that moment! My mother didn’t feel like a hindrance to me in that moment, for I had begun to rise above the limitations that she had imposed on me and I dismissed any claims she made that I couldn’t do something. What I thought, said and did was no longer subject to her approval. To clarify, I said to her “I suggest you do the same” not because she was in my way, but because I hope, for her sake, that she found or finds it in herself to get out of her own way, too.
Too many parents and other allies of young people with autism have the mindset that their young person can’t do things and won’t amount to much. This aids in convincing the young person he/she is no good and/or is unable to decide things for themselves. People with autism have dreams and want to make something of themselves. When you give up on your young person’s dreams, your young person gives up on his/her future. Before deeming the dream unobtainable, at least allow the person to experience (firsthand, if possible) what the dream entails and let them find out for themselves by themselves whether or not they have what it takes to keep moving forward. For instance, when I was a kid, I wanted to be a veterinarian because I loved animals. When I dissected a frog in junior high school and nearly passed out from the smell of formaldehyde, I realized that a vet may not be the best choice for me. I also loved Star Wars and was good with numbers so I planned to be George Lucas’s accountant. My mother gave me a reality check into my dream explaining how many college courses I had to take, where I had to find jobs, what tests I had to pass, etc. “Challenge accepted!” was my attitude and I saw that goal through!
5. “I need to discover my own value and be my own man.”
After I made the decision to leave my accounting job and become a professional speaker, my mother, with many years of professional experience giving trainings and presentations on autism, took me under her wing to co-present with her during her speaking engagements. We even wrote a book together, Come to Life! Your Guide to Self-Discovery, sharing our secrets to success and what we’ve learned along the way. I did want, and continue to want, to present in front of the autism community, tell my story and have a positive impact on others; however, these were her speaking engagements, first and foremost. In addition, I found myself reverting back to old habits and circumstances of being silenced, second-guessing myself and creating the false impression that I needed her to succeed financially and in other aspects of my life. In an effort to be my most authentic self, and ultimately help me become my best self, I again mustered up the courage to decide that I needed to pursue and find more speaking engagements of my own. My pursuit continues to this day.
Too many parents and other allies feel that young people with autism can’t handle failure and that a few instances of failure are the end of the world to them. As a result, all precautions are taken to lessen or even prevent failure in the young person’s life until all hope is lost on the person’s ability to learn anything new at all. Coddling and cocooning young people with autism robs them of valuable experience and life lessons that can only be made known to them when the young person is outside of his/her comfort zone. As scary as that place might be, that’s where the answers to a better life are. Whether it’s doing chores around the house that the person with autism could learn to do on his/her own, taking on volunteer work or a part-time job, or taking college classes towards a certificate or degree, for instance, all efforts to make the person productive or find themselves again need to be revisited rather than abandoned. I encourage you to help your young people find their value again even if there has been failure, rejection, setbacks, etc. because, as Alfred said to Batman, “Why do we fall? So that we can learn to pick ourselves up.”
In closing, I’ve become the man that I am today because of these experiences with my mother and the resulting lessons and I would not trade her or them for anything. I understand that I don’t need to be perfect and I forgive myself and my mother for not getting everything right all the time. She saw the potential in me…and now I see far more potential in myself than ever! Underestimating your young person’s potential at any point in time opens up the possibility to you becoming your young person’s, as well as your own, worst enemy. Your intentions might be good, but it is your young person that needs to live their life…nobody, not even you, can do that for them. Listen to what your young person is telling you rather than overruling and dismissing it…this will create a win-win situation and lead to better outcomes for BOTH OF YOU!