Neurodiversity - How To Go From Awareness to True Inclusion

Most people understand the concept of inclusion, but neurodiversity is a relatively new topic for some. As we enter the last week of Autism awareness month, I want to use this monthly message to lean into neurodiversity.

So, what is neurodiversity? Neurodiversity is the range of common differences in thinking and behavior that we now understand as normal variations in humans. This includes conditions such as autism, dyslexia, ADHD, and others. Neurodiverse variations have played a central role in the development of human society, yet neurodiverse people have been historically misunderstood and marginalized as individuals.

I am a mother of 4 young men - Axel, Wesley, William, and Lennex. Having four children means understanding four different personalities, four different sets of needs, four different kinds of joy, and four different ways of experiencing the world. In helping my sons to decipher the environment around them, I quickly learned that each of them had their own way of decoding their emotions, social interactions, and the physical world around them. This neurodiversity- or the fact that no two brains are alike - is not often knowledge shared with parents in the same way we are given guidance to help our children learn to read, count, or how to interact in social settings. In our family, not only are we Black, but I am also from the Ivory Coast, a beautiful country in West Africa. This meant we were also navigating multiple cultures, ways of communication, and languages.?

My son William is the kindest person in the world, and he will give you everything he has, even if that means he will suffer. He is inclined to please others above taking care of his needs. While I knew this, I didn’t have the tools when he was a toddler to connect his behavior to a brain-based disability or what is termed as neurodivergent. As the definition highlights, neurodivergent people can have many brain-based disabilities, including but not limited to ADHD, Autism, Dyslexia, OCD, and other Mental health conditions.?

William is Autistic, so he is neurodivergent, and people without autism are defined as neurotypical. My son struggled when he was in kindergarten. We didn’t know what was going on until we moved to one of the best school districts in VA (Loudoun County). This is where his second-grade teacher informed us about autism and had him tested. Formerly, we lived in a different County with less access to services or the time to care for each child individually as part of the education environment. This meant my William went undiagnosed for quite some time. We were first taken back by the diagnosis, yet because his teacher was an expert in neurodiversity, she helped us through elementary school. An IEP (individual educational plan) was implemented to give him more time for testing and studies. Inequity in services and access impact many families in need of support. For Black families, in particular, our children are identified as autistic beyond the age of four years old when early support and intervention are critical. The Diagnostic and Statistical Manual of Mental Disorders (DSM) definition of autism was created by observing “young white boys in distress,” according to leading autism advocates in the field. These criteria make it clear why William wasn’t diagnosed until he has halfway through the 2nd grade.

Once we had the diagnosis, the school system made a tremendous difference in educating him and us about autism. We learned to repeat directives more often; we had to understand that he needed a consistent rhythm and a routine to be more successful and independent of us. We also learned that we had to be careful about what we say around him because it takes everything to heart!?

Along the way, we were exposed to many resources; some were less affirming of autism than others. Our family is grateful for a positive approach to autism and how to care for William. An affirming definition says this:

Autism is a?developmental disability that affects how autistic people experience the world around them.?

Autism is a normal part of life and makes autistic people who they are.?Autistic people say:

1.?????We think differently.

2.?????We process our senses differently.?

3.?????We move differently.

4.?????We communicate differently.?

5.?????We socialize differently.

6.?????We might need help with daily living.

Here are a few ways to think about autism:

Autistic people are not “more” or ‘less” or high functioning vs. low functioning autistic based on what some people perceive as the autism spectrum. Instead, there is a range of behaviors in symptoms associated with autism.?

Then, my autistic friend shared with me what her autism looks like compared to her brother’s autism - as shown below:

So, this April, to celebrate?Autism Acceptance Month, I listened to a panel discussion led by an incredible autistic engineer. Her ministry is to uplift the autistic community by serving as an advocate and serving as a disruptor of antiquated ideas about what autism is and how the autistic community wants to be represented. During the panel discussion, she taught me that many autistic people do not embrace puzzle pieces as a symbol of autism. She went on to say " that the puzzle piece denotes that part of us is missing. Autistic people are whole people whose brain acts differently. Autism is not a bag that a person carries; rather, it is who you are. When you accept autism, you can embrace all the wonderful things that make you different and find help in the areas you need support." I was like, wow! Yes, you are 100% correct. Many autism advocates are moving from the puzzle pieces symbol to either a gold or rainbow infinity symbol to affirm the self-advocacy of the community.??

The Autistic Self Advocacy Network states,?"Autism Acceptance Month promotes acceptance and celebration of autistic people as family members, friends, classmates, co-workers, and community members making valuable contributions to our world. Autism is a natural variation of the human experience, and we can all create a world which values, includes, and celebrates all kinds of minds."

That definition truly opens my heart space because my amazing autistic son is all those things. William is now 21 years old. He is a family member, a friend, and a community member. He has an incredible mind and deserves his human experience in an inclusive environment where he is treated with respect and dignity. He won't be left behind.

I still fear that someone will take advantage of his need to please others. Daily, I pray and cover him with GOD's blessings and protection. The way I think about my son's autism has evolved as I learn more and watch him mature into an outstanding young man. William is an autistic person who is finding his way in this world and learning to deal with neurotypical people who have to catch up with him! I invite each of us to go from awareness to true inclusion with everyone in our care, and let's ensure that we don't leave anyone behind.

Have a blessed week ahead!

Edwige A. Robinson?is?a distinguished Technologist, Transformational and heart-centered leader who consistently bridges the gaps between Engineering and business domains. Described as the Translator of innovations, she is a “ Triple Minority” in Tech - A native of Ivory Coast, West Africa - a foreigner, being female and black, she is known for her unwavering courage and optimism. With over 25 years of experience,?Edwige A. Robinson is an Executive leader whose expertise in strategic planning, P&L management, engineering, operations, and risk management, has led to sustained organizational transformations in both the US and Global marketplace. Driven by data and a passion for continuous improvement, she has consistently provided structure and glide paths for organizations to realize their potential for sustainable business growth. Edwige believes in a more diverse & inclusive Tech World! She is a board member and regularly delivers keynote speeches about women in Tech, leadership, and many other hot?subjects.?Three words to describe her: Perseverance, Authentic, and Forward-Thinker. Connect with her here?ttps://www.dhirubhai.net/in/edwigerobinson ?, Twitter @EdwigeRobinson and?on her website https://www.edwigerobinson.com