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
I’m sorry you feel that way. Your contributions were important. You worked hard to keep the dangers of institutionalization in the conversation and that really matters. I appreciate your work, the #IACC is weaker without you.
January 30, 2026 at 7:09 PM
I’m sorry you feel that way. Your contributions were important. You worked hard to keep the dangers of institutionalization in the conversation and that really matters. I appreciate your work, the #IACC is weaker without you.
Reposted by Ivanova Smith
“The federal Medicaid cuts are an absolute disaster for HCBS” & will push many people off Medicaid, leaving them w/o access to the only program that funds round-the-clock in-home support. “People will be forced into nursing homes or left to rely on unpaid family care.”
www.kqed.org/news/1207014...
www.kqed.org/news/1207014...
‘I’d Be Left Alone’: Medicaid Cuts Put Disabled Patients’ In-Home Care at Risk | KQED
After Congress approved roughly $1 trillion in Medicaid cuts over the next decade, California advocates are worried about the future of home-based care covered by Medi-Cal.
www.kqed.org
January 30, 2026 at 8:43 PM
“The federal Medicaid cuts are an absolute disaster for HCBS” & will push many people off Medicaid, leaving them w/o access to the only program that funds round-the-clock in-home support. “People will be forced into nursing homes or left to rely on unpaid family care.”
www.kqed.org/news/1207014...
www.kqed.org/news/1207014...
Reposted by Ivanova Smith
I am furious that New York Times didn’t bother to recognize your IACC role, your representation for people with developmental disabilities mattered a lot. This is just an absolute crap article.
January 30, 2026 at 7:11 PM
I am furious that New York Times didn’t bother to recognize your IACC role, your representation for people with developmental disabilities mattered a lot. This is just an absolute crap article.
Reposted by Ivanova Smith
One of the dangers of normalization therapies like ABA (Applied Behavioral Analysis) is that they can interfere with parents knowing what their autistic kids’ legitimate likes and dislikes—and even personalities—are.
#autism #neurodiversity #BetterWaysThanABA
#autism #neurodiversity #BetterWaysThanABA
January 29, 2026 at 5:50 PM
One of the dangers of normalization therapies like ABA (Applied Behavioral Analysis) is that they can interfere with parents knowing what their autistic kids’ legitimate likes and dislikes—and even personalities—are.
#autism #neurodiversity #BetterWaysThanABA
#autism #neurodiversity #BetterWaysThanABA
Reposted by Ivanova Smith
Done. The original is deleted and a revised one is up
January 30, 2026 at 6:39 PM
Done. The original is deleted and a revised one is up
Reposted by Ivanova Smith
This is also ludicrous because IACC has had nonspeaking people like @neuroscientist.bsky.social and advocates for people with intellectual disabilities like @ivanova1994.bsky.social.
The kicker on the NYT coverage of the new IACC is embarrassingly bad.
“The chelation vaccine hyperbaric oxygen gluten people represent us more than ASAN or Autism Society” is just brain worms. How is that the last word on a panel filled with kooks and quacks?
“The chelation vaccine hyperbaric oxygen gluten people represent us more than ASAN or Autism Society” is just brain worms. How is that the last word on a panel filled with kooks and quacks?
January 30, 2026 at 6:37 PM
This is also ludicrous because IACC has had nonspeaking people like @neuroscientist.bsky.social and advocates for people with intellectual disabilities like @ivanova1994.bsky.social.
Reposted by Ivanova Smith
Hey smartwatch users, please take heed of this warning about your data: “...the current administration's spread of misinformation around autism erasure will harm people who are autistic instead of helping them.” @ejwillingham.bsky.social in the latest TPGA newsletter:
buttondown.com/TPGA/archive...
buttondown.com/TPGA/archive...
"Profound autism" label is profoundly useless
Clustering autistic people under an arbitrary, demeaning label erases their individual humanity and needs.
buttondown.com
January 29, 2026 at 7:31 PM
Hey smartwatch users, please take heed of this warning about your data: “...the current administration's spread of misinformation around autism erasure will harm people who are autistic instead of helping them.” @ejwillingham.bsky.social in the latest TPGA newsletter:
buttondown.com/TPGA/archive...
buttondown.com/TPGA/archive...
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
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.
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.
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...
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 4:36 AM
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.
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...
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
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...
thinkingautismguide.com/2019/01/im-p...
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...
www.aapd.com/autism-round...
May 10, 2025 at 5:12 PM
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...
www.aapd.com/autism-round...
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...
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
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...
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...
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...
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
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...
www.bbc.co.uk/future/artic...
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!
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
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!
We'll start posting our official conference coverage soon, at www.ThinkingAutismGuide.com. Stay tuned!
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
#AutINSAR #INSAR2025
May 11, 2025 at 11:36 AM
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
#AutINSAR #INSAR2025
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
#INSAR2025
May 3, 2025 at 5:58 PM
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
#INSAR2025
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
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.
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/...
journals.sagepub.com/doi/10.1177/...
May 4, 2025 at 5:21 PM
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/...
journals.sagepub.com/doi/10.1177/...
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.
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
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
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
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.
Reposted by Ivanova Smith
I’m encouraged that she admitted that her view is in the minority.
May 1, 2025 at 9:55 PM
I’m encouraged that she admitted that her view is in the minority.
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
@johnmarble.bsky.social your question was so poignant and appreciated!
#INSAR2025 #autres
May 1, 2025 at 9:41 PM
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
@johnmarble.bsky.social your question was so poignant and appreciated!
#INSAR2025 #autres