Ivanova Smith
ivanova1994.bsky.social
Ivanova Smith
@ivanova1994.bsky.social
I am a Christian autistic person with intellectual disabilities. They or them pronouns. my passion is fighting for civil rights all people with Intellectual and developmental disabilities. Founder of WA State Nothing About Us Without Us Act.
Reposted by Ivanova Smith
Yeah. So many people like that think that if you can post on the internet, you must be Level 1 and not need any support.
May 10, 2025 at 4:39 PM
Reposted by Ivanova Smith
I remember many times in autistic subreddits there would be an Autism Mom/Dad yelling at people any how they don’t understand what it’s like, because apparently they assumed everyone there was Level 1 (they weren’t), or telling them they don’t need any accommodations like their child does.
May 10, 2025 at 4:36 AM
Reposted by Ivanova Smith
People may assume that anyone who claims to advocate for autistic people is a good person. This is often not true; many parent-run autism organizations actively oppose autistics on autism issues, specifically orgs like NCSA and @autismsciencefd.bsky.social:

thinkingautismguide.com/2019/01/im-p...
My Autistic Son Needs Extensive Supports. And Yet, I Oppose Labels Like "Severe Autism." — THINKING PERSON'S GUIDE TO AUTISM
Recently my teen autistic son and I walked around a fancy shopping center, while his sibling was at a nearby appointment (public strolls are not always something he can do, but that day he was up for ...
thinkingautismguide.com
May 10, 2025 at 12:37 AM
Reposted by Ivanova Smith
Also note that anti- #neurodiversity parent-led orgs National Council on Severe Autism (NCSA) and @autismsciencefd.bsky.social are NOT among the Autism and Disability Organizations at next week’s @aapd-disability.bsky.social National Roundtable Discussion:

www.aapd.com/autism-round...
May 10, 2025 at 5:12 PM
Reposted by Ivanova Smith
Looking to connect on AAC Research Opportunities? @communicationfirst.bsky.social
has agreed to help facilitate more participatory research in the field by helping to connect researchers (whether or not they use AAC) and people who need and use AAC:

communicationfirst.org/connecting-o...
Connecting on AAC Research Opportunities
If you are a researcher or an AAC user interested in research opportunities!
communicationfirst.org
May 10, 2025 at 1:40 AM
Reposted by Ivanova Smith
On autism disinfo: "A lot of people want not only an explanation but something to blame […] The resulting vacuum has created space for simplistic ideas to spread—even those that lack evidence & have been repeatedly debunked." @autisticadvocacy.org's Zoe Gross, at BBC:

www.bbc.co.uk/future/artic...
Autism diagnoses are on the rise – but autism itself may not be
Autism is better known and diagnosed than ever before, leading to misconceptions that cases are skyrocketing.
www.bbc.co.uk
May 10, 2025 at 5:40 PM
Reposted by Ivanova Smith
It took a week to (mostly) recover from attending #INSAR2025, the International Meeting for Autism Research (we loved being there; it was also exhausting).

We'll start posting our official conference coverage soon, at www.ThinkingAutismGuide.com. Stay tuned!
THINKING PERSON'S GUIDE TO AUTISM
Autism news and resources: from autistic people, professionals, and parents.
www.ThinkingAutismGuide.com
May 11, 2025 at 1:00 AM
Reposted by Ivanova Smith
Research aimed at finding out what a few different stakeholder groups think often don't handle folks who belong to multiple stakeholder groups/have multiple roles very well. Makes it hard for autistic researchers, for example, or autistic parents of autistic kids.

#AutINSAR #INSAR2025
May 11, 2025 at 11:36 AM
Reposted by Ivanova Smith
Grant: Not including underrepresented autistics (with ID/HSNs) is AGAINST the #neurodiversity paradigm, which for autism is about the heterogeneity of the autistic community. We need to share power.

#INSAR2025
May 3, 2025 at 5:58 PM
Reposted by Ivanova Smith
And w/o denigrating the urgency of HSN people’s needs, mostly speaking autistics like me lose speech more frequently than non-autistics may think. However short my periods of speech loss may be, at those times my self-advocacy skills dip too.
May 5, 2025 at 1:54 AM
Reposted by Ivanova Smith
The terms 'non-speaking' and 'minimally speaking' are more useful than 'nonverbal' and 'minimally verbal,' as the latter "may hamper research, practice, & policy efforts aimed at improving the lives of the autistic people who purportedly belong to these groups."

journals.sagepub.com/doi/10.1177/...
May 4, 2025 at 5:21 PM
Reposted by Ivanova Smith
I don’t understand where opponents of the Neurodiversity framework even get the idea that we are denying disability. I see myself as sometimes benefiting from the differences my autistic brain generates, and sometimes disabled by those differences. Many things can be true at once. #INSAR2025
Neurodiversity is not a "denial of disability."

It's terms like #ProfoundAutism "severe" or vague functioning levels which are a denial of complexity.

Let's not reduce people's needs to one wholly inadequate word.
May 4, 2025 at 5:08 AM
Reposted by Ivanova Smith
More on the (common, despite professionals denying it exists) autistic profile of folks who can do academics, go to college, but are pretty severely disabled in terms of functional pragmatics, novel problem-solving, independent-living skills in general, etc.
May 4, 2025 at 1:39 AM
Reposted by Ivanova Smith
I’m encouraged that she admitted that her view is in the minority.
May 1, 2025 at 9:55 PM
Reposted by Ivanova Smith
Disappointed that Singer and Siegel doubled down on the importance of dividing the autistic community when asked what commonalities we can all come together and agree upon.

@johnmarble.bsky.social your question was so poignant and appreciated!

#INSAR2025 #autres
May 1, 2025 at 9:41 PM
Reposted by Ivanova Smith
This is why a virtual option would be so valuable. We need to see more humans like Grant! #ListenToNonSpeakers.
Damon Kirsebom was the ONLY Non-Speaker on a panel at the #CALS last week and he could not join in person so we saw a brief video from him but he also attended virtually.
May 4, 2025 at 12:39 PM
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No virtual option just shows how far behind the research is.
May 4, 2025 at 3:17 PM
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A 6 #AutINSAR I like see more Research on adoption trauma in autistic adoptees
May 3, 2025 at 8:01 PM
Reposted by Ivanova Smith
On burnout and also how we metabolize medication differently, or our sensitivities to medication. Seconding the sleep issues as well.
May 4, 2025 at 12:09 AM
Reposted by Ivanova Smith
A7: @drmbothapsych.bsky.social says that being wrong, especially having a paper retracted, can end your career. @autisticenough.bsky.social says that this is less likely for white men. Much more risky for other researchers. #AutINSAR @INSAR2025
May 3, 2025 at 8:44 PM
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A7: Dena Gassner says that there are a lot of people who have good hearts and then realize that they've done harm. And there's no support for them to be supported through growth. We need to be more welcoming and forgiving, and provide a safe landing space.

#AutINSAR #INSAR2025
May 3, 2025 at 8:42 PM
Reposted by Ivanova Smith
A7: Dr. Botha IRL says too many researchers are writing for their peers. Because terrified for their jobs. It causes a toxic culture of writing for the wrong people. #AutINSAR #INSAR2025
May 3, 2025 at 8:40 PM