The response from the autistic community expressing massive disgust towards the profoundly autistic people on the spectrum that RFK talked about felt much worse than RFK’s words for me.
This is what I want to keep digging deeper on. I know we all have different experiences of what we read online and how it feels to us, but I want to hear more about your perspective if you don’t mind sharing here. What types of comments online felt like disgust to you? Sharing perspectives helps people understand.
-talking about “those” autistic people paints us all in a bad light
-autism is not a tragedy it’s a gift
-“sure” there are some intellectually disabled people with high support needs but that’s not most of us
Just an utter all out frantic wave of people desperate to separate themselves from those with severe autism followed by comments that I should not be allowed to speak on this issue because I’m not autistic (can I just diagnose myself and be allowed to speak now?)
Hi Liz, I’m an autistic adult who has, relatively speaking, low support needs. I noticed the same thing you are speaking about when the RFK comments came out, and it really bothered me. I’m sorry that you were piled on, especially by autistic adults ourselves. I don’t know many autistic people with high support needs, but I personally believe that the rifts between autistic adults and the parents of autistic kids really needs to be healed. We need to acknowledge that we need each other and that we should be one another’s natural allies. It seems like a lot of people are only trying to stoke the flames lately, but I personally would like to reach out a hand in friendship and say “hello!” Even with my so-called low support needs, I very often have very few spoons myself, but I would like to do what I can to learn more about what autistic adults like me can do to help be part of the village for autistic children like yours.
Thank you Marta! Hello!!! My son's diagnosis has isolated our family and this was an extra kick in the heart none of us needed last month. Thank you for reaching out.
I think most schools (in England) need a drastic overhaul of their behaviour policies. They aren't inclusive at all and focus on punishing children instead of understanding the root cause of behaviour and working with them in a restorative way.
Analogies like this one can really help in explaining to school staff how children with SEND Needs aren't able to conform to their policies. Thank you for sharing!
I live on the other side of the world (Colombia) and couldn't agree more to what you just wrote. I felt my son punished through his elementary years by a strict Montessori school methodology...but also felt inadequate in the eyes of many parents that were not interested in opening their minds to different support needs.. 4 schools later...my son is about to graduate Dec this year..it took a lot of exploration, family growth, and tears..
When I said that I believed a genuine wound in the autistic community was created by the responses to RFK Jr.'s remarks, I was piled on by "autism moms" and autistic people alike. Your post just helped me clear up that misunderstanding, at least in my head.
I feel like schools themselves are stressed, especially with the lack of funding to provide for a lot of these children. Schools need to rethink how they budget so these kids CAN be accommodated. Teachers need additional training in the meantime (okay, that requires money as well, but it’s not nearly as high as hiring more staff). And resources available to educate families, especially families from cultures that will outright deny the existence of autism if the person can manage to be in a regular classroom is important.
Absolutely! This is why I offer professional developmental for all educators. General Education teachers don’t get trained to work with neurodivergent kids in the Gen Ed classroom, but serve most of the students with lower support needs. However, if the environment or pacing of curriculum is misaligned with the kid, those needs for support can increase really fast.
The need for PD is profound, even for those of us (myself included) who received training in grad school about how to work with neurodivergent children. Things are changing so quickly in this field, assistive tech (which can be a boon for children on the spectrum) is changing so quickly, and given the diversity of the autism community described here, teaching one student on the spectrum doesn’t necessarily prepare you to teach the next. Most of us desperately want to keep up and do better. But it definitely does take a village — of teachers who are willing to learn and experiment, parents who are willing to advocate and collaborate, admin who are willing to spend the money to keep updating best practices in the building, researchers who are willing to share their expertise with all of the above, and adults with autism who can give us their POV on what they needed and didn’t get. Given that, focusing on solidarity vs infighting is crucial!
This is so true and it's a universal point, not just US centric. the more the community is divided over 'ressources', the less the overall acceptance of neurodiversity advances and adversaries of this diversity play on these divisions.
The response from the autistic community expressing massive disgust towards the profoundly autistic people on the spectrum that RFK talked about felt much worse than RFK’s words for me.
This is what I want to keep digging deeper on. I know we all have different experiences of what we read online and how it feels to us, but I want to hear more about your perspective if you don’t mind sharing here. What types of comments online felt like disgust to you? Sharing perspectives helps people understand.
It was a flood:
-my child is a genius
-my child is twice exceptional
-autistic people are brilliant and successful
-I bet RFK is the one who really poops his pants
-talking about “those” autistic people paints us all in a bad light
-autism is not a tragedy it’s a gift
-“sure” there are some intellectually disabled people with high support needs but that’s not most of us
Just an utter all out frantic wave of people desperate to separate themselves from those with severe autism followed by comments that I should not be allowed to speak on this issue because I’m not autistic (can I just diagnose myself and be allowed to speak now?)
It was a terrible month
Hi Liz, I’m an autistic adult who has, relatively speaking, low support needs. I noticed the same thing you are speaking about when the RFK comments came out, and it really bothered me. I’m sorry that you were piled on, especially by autistic adults ourselves. I don’t know many autistic people with high support needs, but I personally believe that the rifts between autistic adults and the parents of autistic kids really needs to be healed. We need to acknowledge that we need each other and that we should be one another’s natural allies. It seems like a lot of people are only trying to stoke the flames lately, but I personally would like to reach out a hand in friendship and say “hello!” Even with my so-called low support needs, I very often have very few spoons myself, but I would like to do what I can to learn more about what autistic adults like me can do to help be part of the village for autistic children like yours.
Thank you Marta! Hello!!! My son's diagnosis has isolated our family and this was an extra kick in the heart none of us needed last month. Thank you for reaching out.
I think most schools (in England) need a drastic overhaul of their behaviour policies. They aren't inclusive at all and focus on punishing children instead of understanding the root cause of behaviour and working with them in a restorative way.
Analogies like this one can really help in explaining to school staff how children with SEND Needs aren't able to conform to their policies. Thank you for sharing!
I live on the other side of the world (Colombia) and couldn't agree more to what you just wrote. I felt my son punished through his elementary years by a strict Montessori school methodology...but also felt inadequate in the eyes of many parents that were not interested in opening their minds to different support needs.. 4 schools later...my son is about to graduate Dec this year..it took a lot of exploration, family growth, and tears..
Graduation!! It’s so much sweeter when the journey has been longing and winding isn’t it? Sending you 💙 from North Carolina all the way to Colombia.
I had never heard of the spoons analogy. I am left reflecting and thinking about how to use my spoons. Thank you!
I’m so glad this resonated. I mean, aren’t we all here as a collective walking each other through? 🧡
When I said that I believed a genuine wound in the autistic community was created by the responses to RFK Jr.'s remarks, I was piled on by "autism moms" and autistic people alike. Your post just helped me clear up that misunderstanding, at least in my head.
I’m glad it helped, Liz.🧡
I feel like schools themselves are stressed, especially with the lack of funding to provide for a lot of these children. Schools need to rethink how they budget so these kids CAN be accommodated. Teachers need additional training in the meantime (okay, that requires money as well, but it’s not nearly as high as hiring more staff). And resources available to educate families, especially families from cultures that will outright deny the existence of autism if the person can manage to be in a regular classroom is important.
Absolutely! This is why I offer professional developmental for all educators. General Education teachers don’t get trained to work with neurodivergent kids in the Gen Ed classroom, but serve most of the students with lower support needs. However, if the environment or pacing of curriculum is misaligned with the kid, those needs for support can increase really fast.
The need for PD is profound, even for those of us (myself included) who received training in grad school about how to work with neurodivergent children. Things are changing so quickly in this field, assistive tech (which can be a boon for children on the spectrum) is changing so quickly, and given the diversity of the autism community described here, teaching one student on the spectrum doesn’t necessarily prepare you to teach the next. Most of us desperately want to keep up and do better. But it definitely does take a village — of teachers who are willing to learn and experiment, parents who are willing to advocate and collaborate, admin who are willing to spend the money to keep updating best practices in the building, researchers who are willing to share their expertise with all of the above, and adults with autism who can give us their POV on what they needed and didn’t get. Given that, focusing on solidarity vs infighting is crucial!
Yes!
Thank you for sharing!
This is so true and it's a universal point, not just US centric. the more the community is divided over 'ressources', the less the overall acceptance of neurodiversity advances and adversaries of this diversity play on these divisions.
Yes! Exactly this.