‘What should more people understand about autism?’ Your responses are so important to read

Considering this month is an important time to learn more about autism, we thought we’d ask you, our readers, viewers and friends: If any of you have a close connection to autism spectrum disorder (perhaps you’ve been diagnosed, you’re an educator, or you have a friend or child with autism) -- is there anything you wish more people understood?

This could be absolutely anything.

We received responses from more than 75 people -- and your answers were incredibly powerful.

Some were edited for length, clarity or grammar, but we’ll share some just below. These should be required reading.

People had the choice to sign off however they’d like, hence, why you’ll see some first names, some locations, and sometimes, no identifying details at all.

Thank you to our community for reading and participating!

The first question: ‘What’s something you wish more people understood about autism?’

• “As an autistic adult, I deserve the same amount of respect as a non-autistic adult. Many non-autistic adults dismiss me because I am autistic.” -- Cece from San Antonio, Texas
• “This month makes me terribly uncomfortable each year. Almost every news story about an autistic person’s achievements that I read has such a patronizing tone. I think this attitude toward us is rooted in the idea that we are ‘deficient’ intellectually and in communication. Recent research suggests this is not the case -- two autistic people can communicate amongst themselves as well as two non-autistic people can. The difficulty seems to come from communicating across neurotypes. This is referred to in literature as the ‘double empathy problem.’ I hope to see more research and news articles in the future in which the perspectives of autistic people are centered. Thanks for letting me share my thoughts -- this is a good start!” -- Kristen
• “That girls and women with (autism spectrum disorder) often present differently than males, because they want to be social, but have a hard time with social interactions and a lot of females exist in the gray areas of ASD.” -- Anonymous
• “I have had people say that my son doesn’t ‘look’ autistic. Autism may ‘look’ like your child’s classmate, neighbor, niece, grandchild, or a child having a bad day in public. Be kind. Teach your children to be kind. Most importantly, accept autistic children and adults.” -- Amy from Ocala, Florida
• “The person on the spectrum is not broken and doesn’t need fixing. Their brain is wired differently and they all need our love and support. These people are often gifted in many different ways and can teach us so much if we pay attention.” -- Anonymous
• “Instead of gawking and staring at someone with autism when they have a public meltdown, please walk up to the parent/caretaker and ask if they need help. This is especially important if they are alone with the autistic individual. These meltdowns are very distressing to the parent/caretaker, as well as the person with autism. There is no more lonely feeling than being stared at by strangers as you stand by, helplessly waiting for your child to regain composure. Even if they don’t need your help, sometimes just the moral support is appreciated.” -- Anonymous
• “Autism isn’t a disease or an epidemic. It’s actually very under-diagnosed in girls and minorities. It’s also not necessarily a bad thing. We have struggles like everyone else, but a lot of those come from people being intolerant or places not being designed for us. The majority of autistic people don’t want a ‘cure’ because we like who we are, even if the world is a bit harder to navigate. Autistic people are as unique as neurotypicals, so the ‘Rain Man’ view (even if it is sometimes true) doesn’t apply to most of us. Autistic people are everywhere. ... Many famous historical figures were likely autistic, such as Mozart, Einstein, President Lincoln and Emily Dickinson. Some current examples are Sir Anthony Hopkins, Dan Akyroyd and Elon Musk. Autistic people do great things every day! ... Just because some of us don’t speak doesn’t mean we don’t have things to say. Some autistic people use an AAC device (augmented and alternative communication). There is a misconception that because someone doesn’t speak, they are not intelligent and capable of living a fulfilling life. Give someone the right tools and you’ll find out they have a lot to say, and some a valuable perspective on the world.” -- Finley, an autistic adult who was diagnosed at age 15.
• “That it’s not something your child will ‘grow out of.’” -- Anonymous
• “Autism is truly a spectrum.” -- Anonymous
• “If you’ve met one person with autism, you’ve met one person with autism.” -- A former special educator
• “I have trained so many students with autism to be programmers, but they are never hired. My son has autism and has his degree, but can’t get past the interviews. I would love to start a custom training program for someplace like Amazon. ... As a retired teacher and a system engineer, I would love to set up a program and provide the training for any company that is interested. I have so many ideas that I know would work.” -- Norma
• “(People with autism) hear and understand a lot more than they lead you to believe. It’s important not to talk badly about them, in front of them. People with autism have feelings, too. Autism is difficult not only for the child/adult diagnosed with autism, but their parents/caregivers, as well. We do our very best to give our children the best life possible by doing therapies and dealing with schools while trying to raise them to the best of our abilities. As a parent of a son with autism, the last thing I want (is) to have someone who doesn’t live it or understand it tell me what to do. If you want to help us, then offer to watch our child for a few hours so we can take a nap or run errands. Offer respite to the parents/caregivers, not your opinion. At the end of the day, I just want my son to be happy and healthy. Autism is an extremely rough and terrifying road, but seeing my son smile, laugh and just plain happy -- it makes it all worth it in the end. Don’t judge what you don’t know. Educate yourself and learn to accept that it’s OK to be different. People don’t choose to have autism. Society tries to make us accept differences people choose to make, so why can’t society accept differences not chosen?” -- Jennifer from Universal City, Texas
• “Autism programs at most companies are superficial at best. Autism deserves as much attention as all other equity programs.” -- Anonymous
• “I wish people would understand how autism can be lonely -- and make the effort to accept, love and befriend someone who is different, but no less valuable than you.” -- Anonymous
• “People with autism may not understand sarcasm or read body language, but they are not deaf. They can hear every word, yet may not act like they hear you or react to what you say. People with autism have feelings, just like you.” -- Lissie, the mom of a 15-year-old son with autism; who also works as a special needs teacher in Jacksonville.
• “People are quick to make fun of my son with autism because he doesn’t ‘look’ handicapped. If he were in a wheelchair, no one would say anything because that is not acceptable in our society. He is, in fact, far more handicapped than anyone in a wheelchair. But because he looks OK, people think it is fine to mess with him.” -- Anonymous
• “That people with autism are extremely intelligent in many areas and extremely talented, they just require more guidance and love.” -- Brandy, the parent of a child with autism from Copperfield/Cypress, Texas
• “That loud sounds and crowds can be painful for some autistic individuals. Some can suddenly be overwhelmed, and they can’t just ‘get it together’ in the moment.” -- Anonymous
• “So often, people don’t know how brilliant and creative folks on the spectrum can be. I have an elderly uncle whom I believe, as an educator myself, is neurodiverse or on the spectrum. He worked for the government doing analytics and fiscal planning/accounting. He has always been a loner and never married or had his own family. In his assisted living setting, he is reserved and can have difficulty with relationships, and occasionally will have outbursts when pushed beyond his comfort level. There isn’t a lot of awareness of the impact of autism in the elderly community.” -- A teacher in Botetourt County, Virginia
• “I wish people understood that autistic adults don’t look or behave like autistic children. We grow and change, just like all people. I wish people would stop seeing autism in children as a life sentence, and understand that with proper supports, we can do many of the same things other people do. We aren’t broken or defective, just different. And we aren’t a tiny minority. There’s lots of us. We are a different type of normal, not an abnormal subset of humanity.” -- A 40-year-old diagnosed with autism and ADHD in the 1990s.

‘Anything else you want to tell us?’

• “There are a variety of services available to people with autism, however, these services can be difficult to obtain. My 4-year-old son has been on a waitlist for Applied Behavioral Analysis (ABA) therapy for almost a year. The process has been long and frustrating, and he has missed out on receiving this therapy during an important developmental time in his life.” -- Anonymous
• “I didn’t know (a lot about autism) until I became the mother of an autistic boy. He is the light of our family and has brought us so much joy. I encourage all parents who think their child may have autism to get them into therapy immediately. It makes a world of difference.” - DC
• “The families of the people on the spectrum need support on what is often a lifelong journey.” -- Anonymous
• “If given a chance, people with autism turn into great employees. Adaptive interviewing and training must be part of the on boarding process. Big (businesses) need to reimagine their hiring practices for people with autism.” -- Anonymous
• “There are also many characters in media who are autistic or show autistic traits regularly. Some include Elsa from ‘Frozen,’ Anne from ‘Anne of Green Gables,’ Dr. Spencer Reid from ‘Criminal Minds,’ Chloe O’Brien from ‘24,’ Dwight from ‘The Office,’ Eleven from ‘Stranger Things,’ and Beth March from ‘Little Women.’” -- Finley
• “I wish the community was more aware of not only autism, but intellectual and developmental disabilities (IDDs). Understanding person-first language, the puzzle piece vs. the infinity rainbow symbol -- as much as we dedicate time to bring mental health awareness, we need to dedicate just as much focus on those people with different abilities.” -- Antonio from Southeast San Antonio, Texas
• “That some children and adults on the spectrum may become overstimulated in public. As a result, you might witness strong emotional outbursts such as hitting and yelling. This is not a time for individuals to take out cameras to post these uncontrollable events on social media platforms to be judged by society. This spreads the wrong message that these behaviors in public are a result of being spoiled or crazy. It’s vital that we continue to spread awareness, because many do fall victim to bullying, unmerited arrest, and are forever lost in the system. Our community has done amazing when it comes to autism awareness. However, there is more work to be done.” -- Nancy from San Antonio, Texas
• “No neurodiverse or autistic person is exactly like another. I think many more people have traits or characteristics of autism than anyone realizes.” -- A teacher in Botetourt County, Virginia
• “I was the administrator of a Wayne County (Michigan) program for severely impaired young adults. Many of our students were autistically impaired, so I knew them and their families well. Question: How do you treat a person with autism? Answer: Like a person.” -- Anonymous

This article was first published in 2022. It has since been updated.