Scientists discover how dozens of genes may contribute to autism

[Katy]

Gifted article. 

https://www.washingtonpost.com/science/2023/10/05/autism-genes-brain-development/

[Carrie12345]

Okay, interesting, but also… duh. I mean, it’s cool to have scientific evidence backing up layperson logic, but how does it help?

Of all the research TWO PERCENT goes toward researching actual impact?!?!? Holy cow.

[Katy]

2 minutes ago, Carrie12345 said:

Okay, interesting, but also… duh. I mean, it’s cool to have scientific evidence backing up layperson logic, but how does it help?

Of all the research TWO PERCENT goes toward researching actual impact?!?!? Holy cow.

It explains they grew samples with a bunch of different gene alterations and could see the problem was in communication imbalances between the cells. It helps because they may be able to edit those genes and fix the problem. And they may be able to use this in genetic counseling in the future. 

[Innisfree]

That’s fascinating, thank you.

As far as funding goes, I’m greedy. I want both/and, not either/or. Yes, absolutely more money needs to go toward mitigating actual issues during people’s lifespans. That funding cliff is a real problem.

[Ausmumof3]

19 hours ago, Katy said:

It explains they grew samples with a bunch of different gene alterations and could see the problem was in communication imbalances between the cells. It helps because they may be able to edit those genes and fix the problem. And they may be able to use this in genetic counseling in the future. 

There would be some very tricky discussions around neurodiversity to be had if there was a “fix” for autism I think. Options are always good, but I wonder how it will play out.

[bookbard]

So there is a lot of debate about the way funding is distributed around research into autism. Part of it is that some of the biggest funding bodies have a medical model built into their mission. They would have to completely change their mission in order to fund other research, and that won't happen. So really it is about getting new funding bodies who are interested in researching things that impact everyday life. I read a really interesting article about the division between parents of children with very high support needs, and vocal autistic advocates, and the way that has affected funding. 

Autism research at the crossroads | Spectrum | Autism Research News (spectrumnews.org)

[Katy]

2 hours ago, Ausmumof3 said:

There would be some very tricky discussions around neurodiversity to be had if there was a “fix” for autism I think. Options are always good, but I wonder how it will play out.

Yeah, it’s complex. OTOH, the neurodivergent in my family undeniably have a tendency towards dangerous medical situations like seizures (so far too infrequent to be diagnosed as epilepsy, but enough to cause brief cardiac arrest in a 7 year old),  but perhaps there is some balance to be had in safety and neurodivergence in the next 30 years. 

[Carrie12345]

2 hours ago, bookbard said:

So there is a lot of debate about the way funding is distributed around research into autism. Part of it is that some of the biggest funding bodies have a medical model built into their mission. They would have to completely change their mission in order to fund other research, and that won't happen. So really it is about getting new funding bodies who are interested in researching things that impact everyday life. I read a really interesting article about the division between parents of children with very high support needs, and vocal autistic advocates, and the way that has affected funding. 

Autism research at the crossroads | Spectrum | Autism Research News (spectrumnews.org)

The language issue (specific to this article and wider) is real.  
I get that Autism Spectrum Disorders is one grouping for a reason, as are other categories like Anxiety Disorders and Mood Disorders. But there is so much variation under that grouping that we need to know what we’re referencing when we use certain words. We wouldn’t want to conflate a major depressive episode with a full manic episode in a conversation about what individuals need or want, yk? We have to find specific and yet somehow agreeable words.

[Carrie12345]

Anyway, I was meaning to say, I don’t want my son’s brain “fixed”, and neither does he. I’d like to see him have more coping methods. He’s kind of ambivalent, lol.

[MEmama]

2 hours ago, Carrie12345 said:

Anyway, I was meaning to say, I don’t want my son’s brain “fixed”, and neither does he. I’d like to see him have more coping methods. He’s kind of ambivalent, lol.

Mine would "fix" his ADHD in a heartbeat, but not his autism. The one makes his life much more difficult than the other (obviously this is individual dependent).

I'm super leery of this stuff, given history. Not saying a lot of lives could be improved, but there's potential for nefarious uses as well. I think we need to tread carefully.

[kbutton]

2 hours ago, Carrie12345 said:

Anyway, I was meaning to say, I don’t want my son’s brain “fixed”, and neither does he. I’d like to see him have more coping methods. He’s kind of ambivalent, lol.

The things my son appreciates being “fixed” were things that made him less able to be himself because those things ruled parts of his life in ways he didn’t like. 

[Carrie12345]

58 minutes ago, MEmama said:

Mine would "fix" his ADHD in a heartbeat, but not his autism. The one makes his life much more difficult than the other (obviously this is individual dependent).

I'm super leery of this stuff, given history. Not saying a lot of lives could be improved, but there's potential for nefarious uses as well. I think we need to tread carefully.

Yup. I choose to medicate my anxiety and not my adhd for multiple reasons that are individual to me, and not all adhders or anxious people.

51 minutes ago, kbutton said:

The things my son appreciates being “fixed” were things that made him less able to be himself because those things ruled parts of his life in ways he didn’t like. 

That’s how I feel about anxiety. It wasn’t “me”. Other… quirks? Part of my identity.

[Mrs Tiggywinkle Again]

Personally, I wish we would talk more about people who have high support needs, intellectual disabilities and aggressive behaviors.  The experience my friend has had with her now adult, nonverbal, severely autistic son with ID and significant behaviors is wildly different than my lived experience with my level 1/2 son who has a high IQ and whose aggression has decreased with medication and therapies.  She would give all the world to cure her son of autism and I cannot argue with that.

I don’t know that I’d cure either my son or myself of autism, but I do recognize that it has made our lives harder.  And I know a bunch of actually autistic adults who advocate and say that’s just because of ableism, but I can also recognize where my own rigidity, inflexible thinking and lack of recognizing social cues has adversely affected my life—and it’s not because of society and it’s ableism.

I do think it’s a mistake changing the DSM-V to include all of autism in one diagnostic category.

[Carrie12345]

2 hours ago, Mrs Tiggywinkle Again said:

Personally, I wish we would talk more about people who have high support needs, intellectual disabilities and aggressive behaviors.  The experience my friend has had with her now adult, nonverbal, severely autistic son with ID and significant behaviors is wildly different than my lived experience with my level 1/2 son who has a high IQ and whose aggression has decreased with medication and therapies.  She would give all the world to cure her son of autism and I cannot argue with that.

I don’t know that I’d cure either my son or myself of autism, but I do recognize that it has made our lives harder.  And I know a bunch of actually autistic adults who advocate and say that’s just because of ableism, but I can also recognize where my own rigidity, inflexible thinking and lack of recognizing social cues has adversely affected my life—and it’s not because of society and it’s ableism.

I do think it’s a mistake changing the DSM-V to include all of autism in one diagnostic category.

Our co-op was designed to be all-inclusive, largely due to many of us having kids on the spectrum and other neurodiversities. One of the most difficult things was being unable to accommodate a violent child and struggling to accommodate an emotionally difficult child, in addition to what might be expected accommodations for each/all. 
Of course, we were a volunteer organization, not a government funded entity!

[KSera]

13 hours ago, bookbard said:

I read a really interesting article about the division between parents of children with very high support needs, and vocal autistic advocates, and the way that has affected funding. 

Autism research at the crossroads | Spectrum | Autism Research News (spectrumnews.org)

Thanks so much for this share. Super interesting and relevant! 

10 hours ago, Carrie12345 said:

Anyway, I was meaning to say, I don’t want my son’s brain “fixed”, and neither does he. I’d like to see him have more coping methods. He’s kind of ambivalent, lol.

My kids on the spectrum land very different places on this. One has a lot of autism pride and feels like it’s integral to who they are while the other finds it a disabling condition and they don’t want it. Autism definitely sits in an interesting place where it simultaneously considered both disability and not. Deafness is the only other thing I can think of that has some similar dynamics. 

Edited October 6, 2023 by KSera

[Ausmumof3]

2 hours ago, KSera said:

Thanks so much for this share. Super interesting and relevant! 

My kids on the spectrum land very different places on this. One has a lot of autism pride and feels like it’s integral to who they are while the other finds it a disabling condition and they don’t want it. Autism definitely sits in an interesting place where it simultaneously considered both disability and not. Deafness is the only other thing I can think of that has some similar dynamics. 

There is some literature around strengths with dyslexia etc as well that is similar. And I can see how ADHD tendencies are actually an advantage in some work situations.

Its tricky because there’s no denying that these things can be very difficult to manage but that also they may have conferred more advantages before our world became so time-driven and streamlined. And that in some cases the negatives are so strong that people would be very happy to have a cure but in others not really. 

[Ottakee]

My own dd keeps asking when the CRISPR will be available to help with her mitochondrial disorders…..which include intelectual disabilities, mood disorders, seizures, spectrum ish issues, and a wide range of other challenges.