#81 Adults with Autism - New Data and Neurodiversity Summit Info

Until recently, all the autism data collected was based on children, but the CDC has recently started calculating the number of adults in the US with autism. Adults are also being more recognized in books and media, including movies, TV,  and videos.   Today we look at some of the new data and how the new data can make a difference. You will also learn about signs of autism in adults, and resources for adults with autism.  I also share some details about the upcoming virtual Stanford Neurodiversity Summit which I highly recommend.  I attended last year, and it was simply remarkable!

Stanford Neurodiversity Summit Oct 23-25, 2022

Free ebook of questions to ask the college Disability Specialist

Once Largely Overlooked, Adults with Autism Gain Visability
by Shaun Heasley | August 26, 2022

CDC Researchers: Over 5 Million US Adults Have Autism
by Michelle Diament | May 13, 2020

Navigating Adult Services
Advocacy Tool Kit

Resources and Services for Adults with Autism

Signs of Autism in Adults

Transcript

Mickie  0:00  
In 2000, the rate for autism was one in 150 students in 2020. New data based on numbers from 2016 showed one in 54 children were diagnosed with autism. And the most recent numbers I have in December of 2021 showed an autism rate for one in 44 children and a 2020 study from the Center for Disease Control and Prevention estimated that over 5.4 million US adults had autism. So today we're going to look at autism in adults, and explain a little bit of these numbers and what they mean and what resources are available out there for individuals with autism. I'm also going to share information about a neurodiversity summit that is open to the public, and is simply amazing. So you'll get those details today, as well. So welcome to Mickie Teaches College Disabilities and Success. Episode 81 "Autism in Adults"with Mickie Hayes, the opinions in this podcast are my own, please reach out to your college physician or legal services for additional information.

Mickie  1:22  
Historically, autism was a children's disorder, and most of the resources and data and support centered on supporting children to just like learning disabilities, these kids grew up and so now they're starting to look at autism in adults a little more closely with a little more realism. According to an article from disability scoop magazine, called once largely overlooked. adults with autism gains visibility by Shawn Heasley. That was written in August 2006. When he 22 A new study found advocacy group websites are increasingly depicting or at least mentioning adults with autism and the news media, television books and news coverage. adults with autism are becoming more present and visible. Researchers analyzed 49 Autism Society chapters across the country as well as 16 other autism organizations. And they looked at movies, television shows, and fiction books featuring characters with autism. And what they noticed was since 2011, that there was a four fold increase in the use of photos of adults with autism on advocacy group websites, and that 80% of these sites now at least include mentions of the needs of adults, television and movie characters with autism, depicted as children decreased from 660 8% in 2011, to 58% More recently, so the numbers are going down depicting simply children with autism in bringing a little more into balance adults with autism, they did notice, interestingly, though, that 81% of those characters with autism in literature still tend to be children with autism, disability scoop magazine in May of 2020. Also had another article that I'd like to point out, called CDC researchers, over 5 million US adults have autism by Michel Diament. Now, this article actually gives us some numbers they claim, one in 45 adults over the age of 18 are on the spectrum, which comes up to 5.4 million people in the United States with autism. So what the CDC did is they estimated the adult numbers by adjusting the children's numbers to account for mortality as people age, and cross reference the figures with census data for the population of each state. So they have it broken down. If you go to this article, you'll see that is broken down by state with the percentages for each state listed. So the highest percentage was 2.42, in Massachusetts, and the lowest was 1.97. In Louisiana, and obviously the states with higher populations have higher numbers. They also found that the rate for autism in men was much higher than it is for women. Of the 5.4 million adults. Only a million of them are female. What the CDC is trying to do is they're trying to fill in a data gap and they're using this to sistex from the Children's research in order to determine logically what the number of adults are with autism. And the main point that Matt maner, an epidemiologist with the CDC says that at least now you have a starting point. And that's what they were looking for, they needed to have a starting point. Based on the research, in order to start counting adults with autism, it's important to start counting adults with autism for the simple reason that if you have numbers to deal with, then you can anticipate future needs and understand what those needs are right now today,

Mickie  5:45  
but if you go to this article, it has the data from each of the states listed in the article. So if you're wondering if you might be on the spectrum, and you were never picked up as a kid, there are some signs of autism in adults. And according to the National Health Service NHS website, in the UK, there are several signs main signs of autism in adults. So common signs might be finding it hard to understand what others are thinking or feeling. Getting very anxious about social situations, finding it hard to make friends, or preferring to be on your own, seeming blunt, rude, or not interested in others without meaning to finding it hard to say how you feel. Taking things very literally, for example, you may not understand sarcasm, or phrases like break a leg and having the same routine every day, and getting very anxious. If it changes. Now, there are other signs as well. Not understanding the social rules when you're talking to people, avoiding eye contact, getting too close to people or getting very upset if someone touches or gets too close to you. In other words, a struggle to judge personal space.

Mickie  7:14  
Noticing small details, patterns, smells, or sounds that others do not. And I thought I found this one interesting, because when I was listening at one point to Dr. Temple Grandin, that was one of the comments that she made. As she's scanning a scenario where they're at, she made a comment about something. And she said that's something a person with autism would pick up on a neurotypical person may miss it completely. So there's that attention to those very small details and liking to plan things thoroughly before doing them. Now remember, this is not a diagnosis. This is not a list, a shopping list, where you should diagnose yourself. This is simply a list provided as a service. But if you are concerned about it, then at least it gives you a starting point. So if you want to talk to your doctor about it, you can have that discussion. And it makes sense. But always, always, always talk to your doctor. If you have any concerns about any of these things. Now, there's a good chance that if you are an adult with autism, or if you have children with autism, you have gone at one point or another onto the Autism Speaks website. And I wanted to point out that the Autism Speaks website also has an advocacy toolkit, and it shares the ABCs of basic advocacy and negotiation skills, learning the skills, school advocacy, autism advocacy in the community, a parent's perspective, community advocacy, learning the language of self advocacy, and a whole selection of resources are available to you on that website. And you can also download the advocacy Toolkit, which contains additional information about applying for SSI, Supplemental Security Income, accessing the voting process, receiving services from the Division of Vocational Rehab, and accessing social therapeutic and medical resources, supports and services through the developmental disability waiver. And each state should have their own Division of Vocational Rehab DVR and also Developmental Disability Services. So investigate through your child's school. And even if you're looking for adult resources, contact vocational rehab and set up an appointment with them. And they can go over the adult resources that are available to you and how they might be able to help you better Remember that vocational rehab is specifically set up for individuals with any kind of disability who want employability skills and to become employed. So that's Division of Vocational rehabs whole mission is employability, but they do a really good job of supporting individuals who need help. I promised you some information about the neurodiversity Summit. So I'd like to share that with you. Now. The Stanford neurodiversity summit of 2022 is part of the Stanford neurodiversity project. It is being held virtually online from October 23 Through October 25. The theme of the summit is how do you contribute to the neuro diverse community education, service, research or advocacy, the registration fee to attend the summit is $20. That is it $20 to offset some of the costs that they have for accessibility because they want this summit to be accessible to everyone and they especially encourage neuro diverse participants to the summit. Just to give you a quick look at some of the breakout sessions. There is a mental health panel on neuro diversity, and trauma. There's a higher education panel on self advocacy for diverse students across the range of post secondary education institutions. There's another panel with young adult neuro divergent voices. In the media. There are presentations on autistic doctors international processing feelings of autism, collaborating with autistic scientists in neurodiversity, and music. There are presentations on ADHD, autism research, diversity policy, neurodiversity career panel, changing the culture, within education on neuro diversity, these are just a few of the topics that I'm giving you. There are many, many more, so I will be sure to include the link to the Stanford neurodiversity summit in your show notes. Today, I went last year, and it was just amazing. And I've already registered for this year. So I look forward to seeing you again, if you are there, and you join up, send me a message because everybody who joins is part of a panel of names so that they can accept messages and talk to one another. So I would love to hear from you. So today we took a quick look at autism in adults, we looked at some of the statistics that are out there, and how they have increased over the last 22 years where the rate was one in 152, where it is now at one in 44. The reasons for the increase in the rate could be varied. It could be a combination of better recognition, better definitions, better counting clear guidelines, supporting individuals on a spectrum. And it could be another reason that it's suddenly being increased to genetic or environmental or medical reasons. It's hard to say. But the reality is the numbers are increasing. Remember also that your child or you as an adult with autism can't easily get accommodations at your colleges, you need to talk to disability services there and find out exactly what kind of documentation they want, and diagnosis they need, and how they can help you with your accommodations. But it is definitely worth a conversation. They may even be able to tell you how you can get a diagnosis if you're not sure. So do talk to Disability Services and find out if they can help you. I've also noticed that colleges are becoming more user friendly in terms of support for individuals with autism support groups where those individuals can meet. The problem at college is there's a fine line between publicly making these organizations and meetings available and protecting your right to privacy. So colleges are very cautious about how they do that kind of support, but to talk to your college Disability Services, because they may have something that you can follow up on, if you wish to all of the links to this podcast will be in today's show notes all of the articles that I used to show how autism in adults is becoming more recognized and more information is becoming available for adults on the Autism websites. There's a lot of resources out there take advantage of that. If you have any questions or you would like me to address any issues on autism, or any other topics, please don't hesitate to send me an email. My email address is Mickieteaches@gmail.com.

Mickie  15:15  
and my website is Mickieteaches.com. In the meantime, I hope you found today's podcast worthwhile little bit of insight into understanding adults with autism. And I hope it makes a difference for you have a great rest of the day and we will talk again soon. Bye. Information contained throughout this podcast has been gleaned from my own personal experiences, but to ensure accuracy, please contact the Disability Services at the college of your choice to have firsthand information and the most up to date policies and procedures followed for your particular institution of higher education. The content in any of these podcasts is not intended as a substitute for information from legal, educational or medical professionals. Always seek the advice of your attorney or qualified health care provider with any questions you may have with regards to illegal educational or medical concerns.

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