A major study of autism in families has found that brothers and sisters who have the condition often carry different genetic risk factors that make them prone to the disorder.
Research on 85 families found that siblings with autism had the same genetic risk factors less than one third of the time. In nearly 70% of cases, tests on the siblings revealed little or no overlap in the mutations known to contribute to the condition.
The findings challenge the presumption that the same genetic risk factors are at work when autism runs in families. “We knew that there were many differences in autism, but our recent findings firmly nail that down,” said Stephen Scherer at the University of Toronto.
“This means we should not be looking just for suspected autism-risk genes, as is typically done in diagnostic genetic testing,” Scherer added. Instead, he said a full assessment of a person’s genome was needed if genetic information was ever going to inform their treatment.
In years of research, scientists have identified more than 100 genetic mutations that seem to contribute to autism, suggesting that a wide variety of biological processes are involved in the behavioural disorder.
In the latest study, known autism-risk genes were found in 42% of the families who took part. Brothers and sisters who shared autism-related mutations displayed more similar symptoms than those who did not, according to a report in Nature Medicine.
Less than a third of autistic brothers and sisters share the same genetic risk factors. Photograph: Jane Bown
Casey and Sam in The Silencing Properties of Snow (s01e08).
When it snows, it gets really quiet because snow actually absorbs sound. So when you get a snowstorm, it’s like soundproofing for the entire planet. Sometimes I wish it would snow and just never stop snowing.
We all agree how terrible Autism Moms™/Autism Parents™
but theres also the seldom talked about Autism Siblings™ that act like they know all about autism, better than actual autistic people because they have a sibling thats autistic. Often invalidating us because we’re not “as autistic” as their sibling(s).
So there’s this whole “Siblings of Autism” video scholarship contest. And I’m like “that’s cool, but what about the ones for actually autistic people?” I’ve been told that there are tons of scholarships for autistic people, but honestly a lot of them, if not all of them, are just “oh, if you’re autistic, all you have to do is fill out this form and you’re good.” It’s never “hey, tell us about what it’s like to be autistic.”
Where the fuck are the video scholarship contests for those who are autistic?
Why the fuck aren’t OUR voices put first? Why are we being forced to take a backseat to secondhand observers?
“When I saw Frozen for the first time, I realized how similar I was to Anna, and how my brother was like Elsa. My brother has Autism, and when we were little, we were really close. Then he started to shut me out, like Elsa did to Anna. Anna never knew the reason why Elsa shut her out (until she finds out later). I still don’t know why my brother shuts me out, and I don’t think I ever will. But Anna has inspired me to never lose hope that we can be close again.”
Representation Matters. And recently, I learned that one of the characters in my books is having a real impact on real people.
For the sake of privacy, I’m not going to tag any specific individuals I spoke with in this post, but this is a true story about how a character with autism in my books has affected people with autism in the real world.
When I began writing Embassy back in 2013, as I’ve said many times, the story/plot were extremely different than they are now. Most of the characters were the same, but they had different roles, and I included many characters just for the sake of including them, as I still wasn’t completely serious nor as dedicated to this series as I am today, January 5th, exactly four years since I began writing Embassy.
But as I completed more drafts of Embassy, and as I experienced various changes in my life (my most life-changing events were yet to come), I came to realize I didn’t want Embassy to be the book it started out being. I wanted it to be something deeper, playing more to the emotions and personal journeys of the characters instead of the outside plots. My purpose for writing Embassy changed. Suddenly there was a dream behind it, a message that would carry on through the unintended sequel, Resonance, and now Perihelid, the final arc of Arman Lance’s emotional journey (and the conclusion of the main themes of the first three books in the series).
Even with this more-intentional purpose shining through all the way to publication, and through the writing and publication of Resonance, too, there were still elements and characters that began to become more and more relevant to the story overall. And, recently, it has been brought to my attention that one of the still-minor characters has been having an incredible effect on some readers of my books that I didn’t quite anticipate: John Mistin.
For anyone familiar with my books, John Mistin is the older brother of Ellin Mistin, and both of them were recruited to the Embassy Program at the same time as Arman Lance (the MC) from their hometown of Cornell, on the planet Undil.
John is a socially-awkward, overly-enthusiastic guy who will give you his unwavering friendship if you so much as let him speak to you. “Hi, I’m John!” followed by a hard handshake is his signature greeting to every new person he meets. He has a form of aphasia, which is sort of similar to dyslexia, but instead of messing up spellings and being unable to read certain words/fonts, he instead routinely confuses complicated words, and Ellin is constantly correcting his mistakes. He’s aware of his aphasia, and he touts his younger sister as “my favorite dictionary.”
John has an “eidetic memory,” that is, an incredible photographic memory that allows him to vividly recall visual-spatial patterns. His life’s dream in the Embassy Program is to become a cartographer and make maps of every city, asteroid field, and planet in the Program, even venturing out on long-duration deep-space missions to map the galaxy with the Undil Embassy’s Horizon Tower. He’s an extremely quick learner with the latest cartographic technology, and is pioneering mapmaking through neuro-optical holography, where he literally creates maps by picturing them in his head and translating them into a 3D space.
He is committed to friendship. His sister, Ellin, is his best friend, and when she’s hurting, all he wants to do is comfort her. He can’t really tell when other people are uncomfortable around him, though, as we see through Arman’s eyes, Arman is at first very apprehensive about being around John, because he just doesn’t know how to “handle” being around him. Fortunately, Ellin is usually there to calm John down when he gets too excited.
I’m describing all of this because yes, John is autistic.
He’s not a main character, and we haven’t seen too much of him yet (proportionately, at least), but he takes control of the scenes he’s in. He’s a very visible character.
This is so, so, so important.
The other day, one of my followers who has read my books messaged me asking if she could ask a question about a certain character. Her question was non-specific, simply, “I don’t know if this was intentional on your part, but what’s the deal with John?”
When I told her that he’s on the autism spectrum, she was thrilled. Like, absolutely thrilled. And she told me that that’s what she thought, but she wasn’t sure if I had meant to write him like that, because the thing with John is that he sticks out from the rest of the cast. And while I’ve written other, less-visible characters in the series, John is the one I’ve paid special attention to because his role in the rest of the series is incredibly important.
The follower went on to tell me that many of her siblings have autism, and that her brother was asking her about my book, particularly about John. And when she told her brother that John was indeed autistic, her brother got really excited, too. Here’s portions of her responses telling me all of this, verbatim:
“You have…no idea how incredibly happy I am right now. Holy shit. I’M- That’s literally exactly what I was- The fact that he is intentionally- AHH. It’s so rare for autistic people to be represented and then- This is something really important to me because most of my siblings are on the spectrum actually…….
“I’ve grown up surrounded by areas of the spectrum and so I recognized that behavior and the fact that it was intentional I’m so freaking happy. Also, Ellin and John’s dynamic reminded me a lot of my own with a lot of my siblings. SO ANYWAYS THAT WAS PROBABLY MORE THAN YOU WANTED TO KNOW BUT YOU HAVE NO IDEA HOW MUCH MY RESPECT FOR YOU JUST ROCKETED….
“You’ve got this utopian-ish universe and there’s characters who are autistic and bi and- It means a lot to me. But I’ve been planning on rereading Embassy and Resonance so I’ll make sure to try to pay more attention to those scenes!……
“And honestly, it’s so important to listen to anyone really, but especially someone with autism bc a lot of people will tell them to shut up instead(I’ll fight people I swear), but it’s also just-the excitement and happiness they get when talking about something they love and actually having someone listen- it’s so great. And yes! So many people look down at people with autism and it’s so- Like all of my siblings and anyone else I know are pretty high-functioning……..I mean one brother, he has these intricate worlds in his head and, literally, he can put them all on paper exactly and is just-he’s so talented with art and he’s so passionate and his style is so specific to im and ahhh……….
“OH and I meant to tell you. Last night I was talking to one of my brothers and earlier someone had been telling him about how some people won’t let autistic people do things and he was really frustrated over people being ignorant and judgmental basically, and I told him about how there was a character [in Embassy and Resonance] who was autistic and is important to the series and how positive he is, and then mentioned something about how [you] had also mentioned [you’d] known someone in college who had autism who was really smart and basically he just had this really great smile on his face and it led onto this discussion about how proud he is of his own autism and the things autistic people can do, and while there are crappy people there are some really great people too and he just-the look on his face every time I talked about [John] was just really freaking good. So-thank you. :)”
When I read that last message from her, I cried. I was sitting on my couch and just let the tears flow. To hear that, to hear how your work, how a character you’ve had in your head for years, has affected someone who lives with autism… It’s such a powerful feeling. I was completely overcome, because that is so important.
Just yesterday, I was talking with another friend and we got into a discussion about John Mistin and how a follower on Tumblr told me her story about how John has impacted her and her brother, and my friend then told me that her own brother is on the spectrum, too. I’ve been hanging out with her family more and more recently, and she told me that ever since I’ve started coming over, he’s been calmer, and is interacting with them differently, and making goals for himself to follow through on, and that I’ve had a positive impact on him, too. Even just a few days ago, I showed him this book full of satellite imagery of the Earth, and he was absolutely fascinated by it, and he and I were just sitting at the table flipping through the pages, and he was telling me all these stories about stuff he loves doing and everything he’s interested in.
As she and I were having this discussion, I just started tearing-up right there. It’s just so overwhelming. I cannot express how important it is. I always say that my goal with my books is to inspire a love of space exploration and get people interested in the sciences, but never–NEVER–did I think that my stories would have this impact on the unsung-heroes, some of the best people you will ever meet if you just open yourself to them. Yes, it can sometimes be uncomfortable at first, but there is so much to discover, and so much to love about autism.
Even before my follower and my friend told me about their siblings, I’d already had John’s character-arc planned out. Yes, he has a big role as my books continue. Yes, you will see more of him, and you will continue seeing how good of a person he is, how devoted he is to his work, how genuine of a person he is. But now, even I am realizing how important John Mistin is outside of my books.
Representation matters. It matters because we are so numb to thinking that everyone is the same. That there are heroes and heroines and villains and friends and enemies.
We all have strengths and weaknesses, and none of us are magically good at everything. Sometimes the people we want to avoid at first are the best people we could ever meet. I didn’t write John because I needed diversity. I didn’t write John because I needed a stereotype “crazy” character. I wrote John because he is important to the story, because without him, my books literally would not be the same. And now I know he might be even more important to other people than he is to me.
that autism feel where your sibling is professionally diagnosed as autistic so your family is accommodating towards them but you’re self-dxed but you cant tell your family because you know they wont believe you