Just when you think that you’ve reached a point when you can relax and enjoy watching your adult child with autism spread their wings and be successful with employment…you get smacked with workplace discrimination. I don’t have the numbers for how many young adults with Autism are leaving school and entering adulthood. I’m sure it’s a lot. I currently have one of these adults living in my home. My son is a working young adult and has recently been on the receiving end of some pretty intense workplace discrimination. That’s a pretty big accusation, so I’ll explain some things first.
Twenty-seven years ago, in 1990, the Americans with Disabilities Act passed and became law. To describe it in the most simplest of terms, I quote the EEOC, “The Americans with Disabilities Act (ADA) is the nation’s first comprehensive civil rights law addressing the needs of people with disabilities, prohibiting discrimination in employment, public services, public accommodations, and telecommunications.” (Source) This work of legislative art, prevents employers from discriminating against people with disabilities. The scope and coverage of the act is far-reaching. It could mean that a restaurant cannot say they do not hire someone with Down Syndrome, or fire someone because they are in a wheelchair (for simplistic examples and some that have resulted in complaints and court cases even).
When Autism burst upon the scene as a more often diagnosed condition due to better diagnostic tools and more informed practitioners, it came to light that many individuals with Autism no longer needed to be relegated to some sort of locked away status in their home, group homes and institutions. Though an extremely broad disability by any definition, it was discovered that by invoking intensive early intervention programs and assistance, children with Autism could be worked with in a brand new way that would allow many to grow up and lead strong, independent lives. However, with Autism being the “spectrum disorder” that it is, it’s not a one size fits all challenge. This next graphic pretty much sums up Autism as a whole (and that’s not easy to do):
When my son graduated from high school, he was thrilled to apply for and be hired at a local business. Since this issue of non-accommodation is new, I will for obvious reasons, refrain from naming the business or any identifying information. His job is to ensure customer satisfaction and provide adequate and available services and items for customers. Like any business, there is a hierarchy of management, supervisors and then, my son. Every single person save for a few who don’t know him, are VERY aware of his Autism. They also know that he suffers from other comorbid and very common challenges that often exist for those on the autistic spectrum. He has severe anxiety and some difficulty in comprehension and prioritizing multi-step directions. Here is where the elephant in the room appears.
If you tell your young toddler to pick up their toy and take it to their room, you might get lucky and watch that happen. This is commonly known as a two-step direction. A baby cannot do this, but a toddler might with repetition and gentle encouragement and reward. For someone with Autism, multi-step directions can be (and in my son’s case, are) extremely challenging. I don’t have Autism, however, if I have more than three things to purchase or five tasks to complete, more than likely, I will write a list. Sometimes I start the first task and I cannot even remember what the fifth is. For someone with Autism, especially in my son’s individual capability, he simply cannot process five directions without either a list, reminders or some other accommodation. This has been requested MORE than twice. The first time, a long, generic list, that basically was a job description sheet, was provided. Um, no. That did not work and actually caused further confusion. How difficult is it to have a supervisor inform my son of the next task? THEN, provide the next? Is it really that hard?
So, where does this discrimination that I keep mentioning appear at my son’s job? It’s quite simple to be honest. The American’s with Disabilities Act requires employers to provide reasonable accommodations to those in their employ. For example, say there is an employee who has difficulty walking. They are in charge of refuse disposal and they need assistance. Instead of assigning someone else to the task, providing an accommodation such as a push cart with handles, can enable the employee to complete the task on their own. A small investment by the employer of the push cart gives their employee the ability to carry out the assigned task. Tangible accommodations such as these are easy to implement and they are concrete, visible things that solve a challenge.
In my son’s case, anxiety and autism are “invisible disabilities”. Providing accommodations for these challenges are far from impossible, but require the same commitment from the employer who bought the push cart for the other employee. When my son is given multi-step directions, it can be confusing to prioritize. After a period of time, perhaps management forgets that these challenges exist and begin issuing citations and written warnings instead of helpful accommodations that can help the employee succeed. I will not go into specific details in the interest of privacy, however, even after several attempts over a two year period, even with his own self-advocacy (which was a big step), those in a position to help my son have now turned his disability into something to NOT accommodate and instead write-up at every available opportunity.
This is a sign that most advocates for the disabled REALLY don’t want to see in front of them. It’s tedious, often times expensive and to be honest, detrimental for everyone involved. The first time his disabilities and challenges were mentioned, a group of individuals there with me at his place of employment talked about how they understood and they would work to help him in any way possible. Now almost two years later, a day of high stress or confusion is met with a write-up. I’m not talking about things that would require a write-up like, for example, showing up out of uniform. I’m talking about issues DIRECTLY related to his disability. Even with the provision of a mental health note from his doctor, instead of working to better the situation, management cut his hours by more than half without even bothering to discuss it with him. So, with stress on the rise, even less accommodations were even bothered with and every opportunity to write him up was taken and this has led to a suspension.
Now, I’m faced with a crossroads. Of course, a meeting with the manager who was conveniently out on vacation during this last period of hostility, will be consulted in a one-on-one meeting at the first opportunity with me acting as my son’s advocate. Then, if that is not fruitful, then a meeting with the store owner and perhaps the main company will follow. I want to do everything I can to not be filing official Justice Department complaints with the ADA if at all possible, but make no mistake: I will.
This has been my view for many decades. Between school meetings, in-home services, outside therapies, assistance applications, and more paperwork than most people can even comprehend, I have, during the past two decades, been deeply embroiled in what is to me, a lifelong battle. Many people are still woefully undereducated about Autism and how people living with it cope with everyday situations. It is a very complex developmental disability that is unique for each person. Sadly, the general public, school systems, employers and even professionals are still in the dark about many aspects of these disorders. I have been judged by many through ignorance or even an unwillingness to learn and finding it easier to just pass judgment on me or my son. Learning to rise above that and stay on course is something that has taken me decades to accomplish.
I hope that my son’s employers will grow into their responsibilities and do the right thing under the law. They have a strong history of workplace discrimination of several varieties and lawsuits in their wake. I do not want to add my son’s issues to that legacy. All I want is for people who claim to be willing to do whatever is necessary to help to follow through on that pledge. They have a business to run, but they also have responsibilities to treat their employees with the respect and consideration they deserve in general AND under the law.
In the past, I’ve made mistakes opening up with certain people who aren’t educated about Autism or are unwilling to listen. People criticize my son, me, my methods etc, but with each occurrence, one learns to dismiss those people from their life and move forward and upward seeking compassionate and rational people. They are out there, but can sometimes be hard to find. This graphic above explains quite perfectly what I mean. While I am but one small voice in the cog of the giant autistic wheel, I don’t think I will ever cease trying to make things better for my children and to help educate those who are willing to learn and practice acceptance. Let’s hope I can continue this way of patience during this trying time my son is enduring.