Saturday, November 12, 2022

What's It Like To Get Hearing Aids (After Being Hearing Impaired Most Of Your Life)?

When I see videos of infant children being given the ability to hear for the first time, I'm overjoyed like everyone else. Given that chance in my own experience, I've had mixed feelings. 

I wrote elsewhere that I am hard of hearing since birth. I lived in an aural landscape that was varied and rich enough to me, but nowhere near the full set of sounds available to the rest of the planet. I had no sense of the difference; I only knew that I could not hear some things and had trouble understanding some people. I accepted it no more than any person accepts that they can't fly. But it did shape my personality and relationships, causing me to be introverted and independent and others were at least amused by my hearing everything as a mondegreen or at worst frustrated with my constant misunderstandings.

After an ultimatum from my wife - and saving money in my HSA - I got my first pair of hearing aids in the fall of 2019. A world of sounds and understanding immediately became available to me, along with sensory overload. Getting hearing aids is not as simple as turning the volume to 11 and rocking on. 

My audiologist, Dr. Tracey Creswell, warned me of as much. She explained that my mind would need to become accustomed to this, and in time I would learn to sort out the sonic assault she unleashed on me. After a few months, she told me, I would start to make sense of all the new information being made available to me. Hearing is as much a neurological phenomenon as it is a physiological one. 

Immediately after she put them in my ears for the first time, I could hear a clock ticking. The hiss of the HVAC, undetermined hums, clicks, etc. A taste of what was to come. She told me that I would be bewildered at times and probably the best advice she gave me aside from this warning was to ask people from time time, "what's that noise?" so I could learn. I left for work from her office. 

Immediately upon walking outside, I was hit with a manifold increase in new sounds - the hiss of cars on the Taconic State Parkway, the sound of a single leaf skittering across the parking lot, a distant car radio. Getting into the car and turning the ignition I heard the ignition beeps and turn signal clicks for the first time. I had learned about these things and even installed the devices that make them in older cars  - but never heard them. I have driven for leagues on highways with a perpetual right hand turn signal before I discovered it. 

Then came the first unknown. Something was rattling in the car. Where was it? Was something loose? About to fail? What did this mean? I had no one to ask and I had to pull on into a parking lot to discover it was a small Nerf gun in the plastic cup holder of a door. 

Later at work I noticed I could hear noises and indicators that other people had long learned to ignore - the sound of the badge reader accepting my badge (thankfully), or the microwave indicating it is done with it's program. I heard a colleague talking 100' or more, down the hall. The clacking of keyboards - through walls. Distant phones ringing. 




 

 

 

 

 

Friday, May 10, 2019

Just one word, Benjamin.

In line at the grocery after work, circa 1990, cashier asks man ahead of me - about 45 years old - "paper or plastic?" He responds, "Plastic! of course!" and looks at me as if I get him because I had my IBM Badge still hanging off my shirt pocket or maybe I was wearing a tie. I smiled. As the cashier rings him up, I said, "That reminds me of a scene from the movie The Graduate. Are you familiar with it?" "Yes," he says, proudly, "It's why I got into the business!" Again, looks at me like I get the joke. The cashier looks at both of us suspiciously. She finishes his order, he fiddles with his bags and change at the end of the counter, and she asks me - "Paper or plastic?" I proudly responded, "Paper, of course." The man walks away glaring at me over his shoulder.

Monday, April 30, 2018

Day 30: Thanks

I am grateful for a lot of things this month.
I learned a lot these last three and a half years - from many of you, and from people in the autism at work community. I'd like to thank a few of you:
I once heard an expression, "If you are the smartest person in the room, you're in the wrong room." I assure you that throughout my entire career, through meeting all of you and more, I have been in the right room all along.

Day 29: Acceptance Means

I’m a day late, but I will get this and one more in before the month closes.

To me, acceptance means:
  • We can keep researching autism but not try to 'cure' autistic people
  • Parents don't fear autism but get the early intervention needed
  • Teachers don’t make fun of autistic kids…
  • …so kids don’t make fun of autistic kids…
  • …and kids treat each other better…
  • …and autistic kids go to prom…or whatever they want to do
  • Colleges work hard to recognize and develop their talent
  • Employers tap that talent and develop it and get better managers and employee morale
  • Retail establishments make their places of business autism friendly
  • Neighbors help one another raise the kids in their neighborhood and treat autistic adults well
  • Families help each other
  • And one day, we don’t need Autism Awareness month, because writing a blog post a day is hard work!

: )

Saturday, April 28, 2018

Day 28: Famous Autistic People

I've seen a lot of articles written about famous people who may be autistic, like this one. They're pretty cool, but in some cases they rely on speculation because they say a person long dead was autistic. People have said that about many people in history, including Thomas Jefferson, because of the way they were described by others.

My two favorite famous autistic people are Temple Grandin and John Elder Robison. Both have remarkable and different stories about how they dealt with and learned to embrace their autism. Temple Grandin's mother worked very hard to ensure she got the best care and was able to get through school and go on to college. She's now a famous author and has had a movie written about her life, starring Claire Danes.

John Elder Robison's life was a lot different. He was never diagnosed until much older, long after he quit high school, worked for KISS and Milton Bradley, and made his mark in numerous other ways.

Both Robison and Grandin speak at conferences or have done TED talks that are very inspiring.

Day 27: Meltdowns

I gotta confess, I know very little about this topic except what I have read. Autistic persons are often very sensitive to certain things - lights, noise, smells - even foods and clothing or other tactile issues. As such, the can get very overwhelmed with a lot of sensory input that the rest of us can ignore for the most part.
Here is a video that attempts to simulate what the feeling of sensory overload is like: https://www.youtube.com/watch?v=Lr4_dOorquQ&sns=em
What happens when you get too much sensory overload? Well, think about being tired, irritable, and generally overloaded with a lot of responsibility and you have five kids screaming and running around the house, four cats begging to be fed, a dog that needs to be walked, and a parrot that won't stop squawking. You're doing just fine, but then the smoke alarm goes off because your husband left the oven on and the pizza is burning. At that point, you want to just curl up into a ball because you've pretty much had it. Calgon, take me away!
You just want FIVE MINUTES AWAY from all this and you can't find it. That's a meltdown.
Meltdowns are NOT tantrums. Tantrums are when a child tries to get their way by crying or throwing a fit to see if that behavior will get them what they want. A meltdown is a reaction to overstimulation. The reason I bring that up is because you may see a child having a meltdown in public and confuse it with a tantrum and then give the evil sideye to the parents.
I've never seen a meltdown - not that I know of - But what I have read is that they may strike out or some curl up into a ball. Knowing that the environment you are in could cause a meltdown and watching for the signs of one (increased pacing, perhaps, or started looks and nervousness) can give you a clue that one is coming and you can head it off by giving the person down time.

Final day of Autism At Work Summit 2018

(LtoR: Paul Austin, IBM; Teresa Tatum, EY; Tamara Burks, PWC; Sarah Crump, Freddie Mac)

The last day of the summit started off with a video from NBC about Ford Motor Company’s hiring program. Notable in the video was the pride in the new engineer’s job with the complexity of his work and the relief his mother felt at his son finally being hired with a satisfying job. The NBC announcer concluded with a neat twist on Ford’s motto: “Inclusion is job one.” Autism Alliance of Michigan was instrumental in helping Ford start their program.

The first speaker of the day was Holly Robinson Peete. She is an actress, singer, reality TV star, husband of NFL player Rodney Peete and the daughter of Matt Robinson (who played Gordon on Sesame Street) and most importantly, the mother of an autistic young man.

Her family life is the subject of a Hallmark TV reality series, “For Peete’s Sake”. She showed some clips from the show, including one in which she reviews pictures of her son from a modeling shoot. He is a striking young man at age 21.

Peete calls the day her son was diagnosed with autism “Never Day”. That was the day she was told her son would never speak to anyone, never get a job, never say, “I love you” to his mother. She then showed us a video, narrated by her son, in which he would say, “The doctors said I would never do _____ “, repeatedly, and ending the sentence with different actions each time but always punctuating with an exclamatory “WRONG” as the video showed him doing the action.

Peete and her family started the HollyRod foundation to support Parkinson’s research because of her father, but later expanded their scope to include autism.

In addition to videos of her son in a modeling shoot, there were those of him working as a bat boy for the LA Dodgers and giving speeches – another thing he was told he would never do, much less speak at all.

She was a very energetic speaker who repeatedly praised the companies there working to hire people on the spectrum. During the Q&A session she was brought to tears by a woman who explained that Peete’s book, “My Brother Charlie,” and work were very inspirational to her family.

Panel discussions started up after that. The first one that I attended was about the first year of employment.

SAP’s Jose Velasco was first to speak, stressing the importance of keeping local partnerships with groups like The Arc, with whom they frequently partner in the cities in which SAP works. Velasco also stressed the importance of teaming with the government vocational rehabilitation programs. He also talked about the crown jewel that ensured the success of the employee for the first year – a support circle that included a job buddy, a mentor inside the company but outside of the immediate job, and a community support buddy outside the company.

Ford Motor Company’s Meeta Huggins was next, explaining their small pilot that resulted in four people being hired. They relied heavily on Autism Alliance of Michigan. Huggins stressed the importance of AAOM’s robust process, in which their staff come in and learn the jobs that the candidates are being interviewed for and suggest improvements and structure to the jobs to accommodate persons on the spectrum.

EY’s Hiren Shukla talked about the geographical variances in setting up their program. There are different NGOs in every different state they operate, and in some cases there are no local NGOs that can help them as The Arc does in other places, so they forge their own path following what they have learned.

Shukla stressed the need to convince the stakeholders in the hiring program to change management and process practices permanently and across the company for all employees because – as if often repeated in these summits – the accommodations that are good for autistic employees are good for all employees, increase morale and job satisfaction, and make better managers and coworkers.

All the panelists spoke about or agreed on this idea and offered examples such as making explicit such information that we assume everyone else knows or can just figure out on their own, such as:
·     Suggesting how to process email queues
·     What company or industry acronyms mean
·     Where to find Information about corporate policies

Each of the panelists also stressed that when vetting candidates, you often don’t get a great resume because of lack of practical experience that we look for in neurotypical people. You might not find an internship, for example. So, you try to draw out of them other examples of what they have done to demonstrate leadership – being an Eagle Scout, for example, or moderating a video game platform.

Two great questions came up during this session. First: What is the right amount of staffing to devote to this? Jose said that at first the program was created with no central leader and run by volunteers helping the recruiters and HR – becoming buddies or mentors. It was not until the program was about a year old that he was selected to be its leader full-time. Ford’s Huggins said she is expected to process this as part of her day job. EY’s Shukla said roughly the same.

Second, Colleen Allen of Autism Alliance of Michigan had more of a statement that ended with a question: You get great talent as a result of the help from all the state agencies and NGOs - what is the corporate responsibility to support these external orgs? Jose Velasco responded that their work helps future communities as well as their companies, but the program was not part of SAP’s corporate social responsibility office, yet.


The second panel of the day was one that I participated in with three ladies, one each from PWC (Tamara Burks) , EY (Teresa Tatum), and Freddie Mac (Sarah Crump). We were to speak about the surprises and trials of just starting a program. We each had different approaches to how we started the program and the model that we used. Some did their own vetting and interview process, IBM used a model that Specialisterne provided with assistance from AAOM that involved a long interview process – four weeks, really. Each of the major companies who sponsored the event do it slightly differently.

What came as a surprise to me was one well-known disabilities advocate and expert telling me that “IBM Japan has an amazing autism hiring program”. While my colleagues and I have spoken to then as recently as last summer, we were unaware of their progress since then, and at this writing I have not heard back from them in my request for information about their program.

One more point that came out of this panel discussion was a question from the schoolmaster at Hilltop Preparatory school in Bryn Mawr, PA. He wanted to know: how do you find the companies that participate in these programs and how do you connect with them? I stated that aside from contacting any of us directly while at the conference, some companies have special portals for persons with disabilities or check boxes that they can hit to ask for accommodations during the interview, or one to click to indicate they are disabled and need accommodations (the latter meaning they disclose their disability). I also implored the crowd – composed largely of schools and NGOs – to start writing to other employers and make their concerns heard.

The last panel of the day was about mentoring the new hires. Microsoft’s Jenn Guadagno explained that in the mentoring culture of Microsoft it was easy to implement a program for new hires with autism. They looked for volunteers and gave them special training on working autistic people, and many have developed strong relationships.

EY’s Jamell Mitchell said that in his organization he tries to change up mentors once in a while to vary the experience of the mentor and the mentee, but often times people who’ve mentored a person on the spectrum want to keep their relationship going.

A good question from the crowd was: what if you have people who are already hired before the program started and they want a buddy? Jenn at Microsoft said they were offered the same option to have a special buddy if they so desired. They would also be asked who could know about their disclosure and how open they wanted to be about it, and their wishes would be respected.

After a few discussions about inappropriate behavior between mentors and mentee, all on the panel agreed that these behaviors should be mitigated carefully and neither should the behavior be blamed on the autism nor should autism be used as an excuse for the behavior; HR policy and performance criteria can apply to all people equally whether they are on the spectrum or not.

After a lunch we gathered all together in one room again and the sponsors of the summit – EY, SAP, Microsoft, and so on – all said goodbye and asked for feedback from the crowd. Many people suggested small improvements or praised the use of captions on screens before the crowd.

The most compelling comment I heard, though, came from two autistic individuals who stood up and asked for more representation by autistic individuals. They both thought that there should be more #actuallyautistic people attending the summits in the future. It echoed John Elder Robison's comments from the two previous summits: “Nothing about us, without us.” This is a great movement but we should not forget that we are trying to serve a community in addition to ourselves, and corporations would do well to get input from the very people they are trying to help. NGOs, state agencies, academics and researchers should, too, but to a lesser extent. We’ve come a long way from merely casting aside autistic people, but we have a long way to go before we better integrate them in school, work and society as our equals, and that must have input from them.
The summit was hosted by Microsoft and sponsored by them, EY, Ford, SAP, JPMC and DXC. As with the two previous summits it was a great way to connect with like-minded people and learn a lot about how to recruit, hire and maintain autistic people. I want to thank Jen Guadagno and Neil Barnett of Microsoft for their hard and impeccable work in putting on this summit and for allowing me to participate in a panel. I hope that IBM and other companies will do more in this movement in the future.