When Henri Gordon started her career 20 years ago, she thought a few of the people she worked with were a “just a bit weird.
“They would just be extremely quiet or pay a lot of attention to detail which seemed unnecessary, or else they'd be really resistant to change,” she recalled. “At that time, I'd heard about autism, but I didn't have a clue what it was.”
Then her 3-year-old daughter started to display some unusual behaviors. At 4, she was diagnosed with autism.
Henri was one of seven Elsevier colleagues with autistic or neurodiverse children to share their experiences with employees on a global panel. Nearly 300 employees watched the virtual event, many sharing their own experiences in the chat. Held on March 31st in advance of Autism Acceptance Month, the panel was organized by our colleagues in Elsevier Enabled and Thrive — employee resource groups dedicated to empowering people with disabilities and gender equity.
As parents of neurodiverse children or young adults, we talked about the many ways autism can present and how difficult it can be to recognize. We shared the challenges it can bring and the solutions we’ve found. And we talked about how we can make the workplace more friendly for neurodiversity.
The discussions sparked by the panel and audience participants has led Elsevier colleagues to look for ways to create an even more supportive and productive environment for neurodiverse colleagues and those with neurodiverse family members, said co-moderator Erin Hill-Parks, a Strategy Data Analyst for Journals at Elsevier and co-global lead of Thrive. In addition to starting an employee-led neurodiversity working group, organizers gathered participants' comments "to feed back on the many ways we can all be allies for neurodiversity.”
You may well have colleagues you don’t know are autistic. We almost certainly do at Elsevier. So it’s important to ask whether we are extending the proper support or consideration to enable them to participate fully.
What does autism look like?
When people think of autism, they may often think of “classic autism,” where a person has noticeable problems with speech, behavior and social interaction, accompanied by an exceptional ability or intelligence. But autism and neurodiversity presents in a wide variety of ways. Panelists noted multiple times that each autistic individual is unique and has their own skills and needs. Also, autism does not imply anything about intelligence, interests or abilities. Greta Thunberg has called autism her superpower, and with any superpower, it presents differently for all.
Autistic people can be adept at masking their difficulties in communicating and socializing, having developed coping skills through practice on their journey to your team. Autism can be especially difficult to diagnose in girls and women, perhaps because they tend to be more sociable and so “mask” their autism, and it may also reflect societal expectations that autism is a male trait.
Below are excerpts from our panel, which show the wide variety of qualities of autistic individuals and how we can all be aware, support and celebrate the autistic people in our lives.
“If you have met one person with autism, you have just met one person with autism.”
Sesha: I have two children. My daughter is 25, neurotypical, and is attending New York University completing her master's degree with a focus on special education and education policy. She's looking forward to working as a high school teacher for a few years in an urban school district like New York and going on to do a PhD.
Our son, Saket, who is on the autism spectrum, is in his final year of high school. Our son is an artist and loves everything and anything to do with art; museums are like temples for him, and he would like to live in one of the art museums enjoying his favorite styles of modern and contemporary art. Over the last 10 years we have visited about 50 plus art museums between North America, Europe and Asia.
As we have seen with our son and many of his peers, the spectrum of those with autism is wide and affects each individual in a very different way. There are some common behaviors but if you have met one person with autism, you have just met one person with autism. Individuals who are on the spectrum can be very different with unique needs and challenges .
Our son is fully independent and self-sufficient in some areas. But there are many areas where he needs a lot of support, and supporting him in the areas where he needs help while encouraging him to be fully independent in other areas is a delicate balance. That’s what my wife, my daughter and I try to achieve each and every day and that's a learning process.
Lisa: My son, Chris , was diagnosed with autism last year when he was 3. His version of autism was delayed communication and speech, tantrums especially when he was tired or something unexpected happened, and always standing on the edge at the daycare because he didn't know how to play with other children. There were very few people that he actually came to peace with: only his Daddy sister, and me. We thought, before the diagnosis, that because he liked cuddling and made eye contact and could recognize basic emotions like happiness and sadness that he wasn't autistic. We didn’t know how different the presentations of autism could be which can make it hard to get a diagnosis.
Pam: I am part of Lisa’s circle of support. I'm the proud mother of two young adult women who have had epilepsy. One has outgrown it, and one continues to sort of have to negotiate some persistent and learning challenges. The issues we need to deal with in advocating for our children are shared, even though they have different neurodiversities.
Henri : A couple of years ago, my daughter aged three started to display a few unusual things: she suddenly insisted that the lights in the kitchen were really hurting her eyes and we used to have breakfast in the pitch black with a tiny bit of light creeping through the curtains, and she wore the same clothes every day for six months, the same T shirt, the same pair of socks, the same shorts and a pair of wellies.
Eventually when she was 4, we got a diagnosis of autism, and then (we) started to learn much more as we read about it.
Linda: I'm a widow of an autistic husband, and mother of a 32-year old autistic woman. She still lives with me because, although autism is not a fear like in my days and she’s very intelligent, she’s also a very shy person and doesn't even dare to pick up the phone. I've jumped through many, many hoops, and I would like to support my colleagues that are just starting this whole process with their toddlers and children. I know that nowadays, my colleagues with young children have more support than I used to have. They (used to say), ‘Oh, you're a strong woman, you can cope with all these kind of things.’ But it's a challenge, I can tell you. The more awareness about this, the more it helps us, your colleagues, and also the children of our colleagues that are coping with autism.
What are the most surprising, shocking or hopeful things you have learned about autism?
Sesha: Some of my biggest learnings are about how passionate, caring and loving individuals on the autism spectrum can be. Interacting with them helps us to become better human beings. With our neurotypical child, we went through the typical parenthood, and there are a lot of lessons we learned right, like how to deal with anxiety.
With delayed development, such as with autism, routine activities like attending school, going on a school bus, and interacting with peers can be overwhelming; you would think that it's the same routine on Wednesday and Thursday, but on Thursday, your autistic child could need a lot of extra support to be prepared for the routine for what may seem to us a trivial reason. Me, my wife and my daughter always have our calendars synced so that we know who has a busy weekend or evening so there is somebody available to support him. So big learnings for us are also to just be prepared and flexible and able to provide the support for him.
Pam: I found that what Sesha has described was true as well. With my oldest daughter, typically Mondays were days with a very high risk of seizure, and it's no surprise the thought of attending school was just more than she could handle, and it put her over [seizure] threshold. … Although it can be very overwhelming, it is important to try to find those patterns, and then form that that circle of support, that team, for your child.
With regard to securing medical and educational support, it is important to understand that no two situations or paths are identical. One family may find their best-fit team right away, and for others, it can be a series of trial and error.
Can you share one of your child’s strengths versus their neurotypical peers?
Pam: Two things come to mind: outright creativity, and attention to detail with stories. My daughter, who's 24, has done all of the tests, and she was two standard deviations above average in her ability to retell stories. Think of the opportunities that that brings. We try to build on that as she pursues a career, where she wants to help others like herself so that's a great strength that we we uncovered and seeing it on tests was very empowering.
Lisa: Physically, Chris is very, very good. An example is that he could ride a bicycle on two wheels without any stabilizers when he was only 2. It's quite impressive, and if you try to work out how he does it, then you see that he is very contemplative at first. He stands back and observes others very carefully,. And then he just goes in small steps; he'll try one little thing and repeat it over and over until he gets it, and then the next little thing that he practices until he’s mastered it, and by building up in these very small steps he is able to do things that are really quite scary sometimes for a parent, but in a way that is safe and manageable for him.
Linda: My daughter never said Mama or Dada, and then all of a sudden she came to us and said a full sentence, like, ‘Mama, am I allowed to get something out of the refrigerator?’ I was really shocked because she was going to talking lessons to say whether something is a cat or a dog and she was trying to be perfect, so everything takes longer for her to learn and to absorb; trying to be perfect is a strength but also a weakness. She’s also very creative, and I can see this in how she hides things and copies the normal accepted behavior of other people.
How can we make work more welcoming and successful for neurodiverse employees?
Sesha: Our team, the digital content family, is about 30 people. We are parents and we are individuals who support friends and family members who might not necessarily be on the autistic spectrum but might have other challenges, like high anxiety and depression and ADHD. The team shares suggestions and supports each other, and it is truly amazing to have that kind of understanding and support among our peers. The fact that we're having this open panel discussion and there are so many people in attendance shows that this is a topic we care about; we support each other, and that kind of support mechanism is absolutely critical.
Linda: I've been with Elsevier for almost 40 years, and I see an absolute change in attitude and behavior towards people who have different sexualities or abilities for example. We live in a time, especially in the Netherlands, when we can talk about everything, so dare to approach your colleagues; they talk about their weekend with the children and you can tell them about that that's it's different for your child to go to a fair or whatever because it’s so overwhelming. I think the most important thing is creating awareness.
Lisa: Based on observation of Chris, I think we can make the workplace more welcoming for autistic people if we don't rely on body language or expressions or little hints in language to convey what we mean. We have to be very plain and state clearly what it is that we want.
From my reading, it seems to be quite typical of autistic people to be very literal. I also see that Chris likes to have things repeated, so I feel that writing something down so that the person can revisit it when they want to that would also be a good complement to a clear spoken message.
Henri: I've been doing a lot of recruiting lately, and I’m really starting to think about whether we could do that differently. Recruitment can be an incredibly stressful process for somebody: a new environment, new people, coming into the office. Also, when someone's applying for a role, they're not necessarily going to let people know that they are autistic; it's really tricky because you don't know if people are just nervous because they're in an interview, but I'd love to offer elements of choice, such as whether they come in for an interview or do a virtual one.
Henri: When we meet someone new in the workplace, I think about my twin younger self. Don't expect everyone to be the same as you, and understand that we don't have to be the same and embrace the diversity of people. I said something to my daughter the other day about somebody pulling her leg, and she said that nobody pulled her legs, her legs are fine. She's so literal so you could just adjust the way you talk to the person if you started to notice things like that, even though the person might not have shared that they are neurodiverse.
Lisa: I'm not sure that this needs to be so completely different from how we engage with any other colleague. We are trained, I hope, to know that people have different preferences in how they like to learn, how they like to communicate and in how they like to receive information. Some are very visual and some are not, for example, and I think that is true amongst neurotypical as well as neurodiverse people. I think, whenever we meet a new colleague, we're probably all trying to get a bit of a sense for how you best work with this person, what's the best way of communicating with them and what's their communication style back to me and it doesn't necessarily need to be any different with a neuro diverse person. I agree with Henri that the label can be important and helpful, and there is a person attached to that label and we are trying to meet a person.
Linda: If I think back about 30 or 40 years, I think that I had a colleague who had autism, but I simply didn't know. The person would put her paper clips in order every day, and then I came in and said good morning and swept the paper clips into the drawer, so they had to start it all over again. I simply didn’t know that I was bullying them. It's important that people are more aware that being different could also mean there's something going on in your brain or in your body and that we accept those kind of differences.
Pam: It's also just having each other's back. As an example, pre-pandemic I would visit the office, and I wanted someone whose work I’d seen to design a piece of collateral. I asked around, and someone told me that the person prefers to receive an email rather than an unexpected spoken request. That’s the person’s network looking out for them in a very polite and practical way.
What are your hopes for autistic children? What do you want the world to be like?
Pam: I hope that we look back and we say, ‘Oh, thank goodness we got over that hurdle.’ I already see, in my career, how things are are better, with more support than 10 to 15 years ago. I hope that we can create a world where everyone, regardless of whether they're neurodiverse or neurotypical, has the same level playing field and that everybody can have their choice of career and how they spend their time, and it just gets gets easier for everyone.
Linda: I think earlier recognition is very important for parents and also for the children. It took me 13 years before my daughter was diagnosed with autism. As parents, if you recognize something that's a bit different from other children, just talk about it with other parents and with your family doctor because early recognition and early help is extremely important.
Henri: As I look back at myself 20 years ago, I'm sure some of those people whom I’d labelled in my head as a bit weird were somewhere on the spectrum, and I felt so bad for not having any sort of appreciation of what that was. I want to make sure that now, when my daughter is coming into employment there aren't people like me thinking all she's just weird and I really want to make sure there's so much more awareness of autism.
Hopefully, this webinar can help bring a bit of awareness and help us all to embrace diversity.
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