Holden, this is a fabulously written and interesting piece. I certainly landed on your side of the argument after reading it- particularly the merging of social and medical models. Thank you!
Part of the reason I landed on your side is empirical. I spend time with 75 tier 1 and tier 2 autistic 4-12 graders every every week as part of my pet therapy work and serving on the board of the school. The variation in how autism presents itself among these 75 kids is huge. I mean the differences in the social presentation of behaviors between the autistic kids at the school is probably as large as the behavioral differences between the 75 autistic children vs a random sample of neurotypical children. That kind of variation is still very hard to explain in a medical model.
I would add that the Neurodiversity Paradigm is often misunderstood as a purely social model when it actually embraces the medical model in the sense of medication being taken to support the neurodivergent person. As for masking, Frith is wrong, and peer-reviewed research supports this.
It is good that she has rowed back on her comments about Chris Packham, but her imput has been damaging to those of us who are late diagnosed partly because we have masked for decades and are not little white boys.
Whilst this very well written article does add nuance to the discussion, the damage remains. Research develops and new knowledge is added all the time, some of which will challenge what has gone before. That is how it is. What Emeritus Professors need to do is acknowledge their past contribution, but also have the grace to move aside for the current crop of peer - reviewed and well respected researchers and not disrespect the work of the last 2 decades.
I appreciate this. My 17-year-old daughter is Level 1 autistic, and I am almost ashamed to mention this to people whose children are Level 2 or 3. But there is no other way to explain her needs, behaviors, and way of encountering the world—especially other people—than that she is autistic. Since the diagnosis, she has been able to access more support in school than ever. Before diagnosis, she was a behavior problem. Now, she gets support.
What an excellent article, I applaud both of you. Getting into real discussion with people we disagree with is the foundation of civilised progress.
Strongly agree that social and medical models both useful. I wrote an article describing one possible way to reconcile these in neurodevelopmental conditions, a ‘doorframes’ model of disability, I believe this is the way of thinking about this which would defuse these arguments. The traits are real and in us, like height. Difficulties are real and experienced by some, when we hit our heads on a doorframe. Where to draw the line is contentious because the difficulty is in the *interaction* - one person can fail in one environment and thrive in another.
Some of us were diagnosed late less because are masking per se and more because no one was diagnosing in the 1960s 70s my case southern Africa. So I beg beg beg for diagnosis. I begged and tried to figure out what was going on with me. Nobody could tell me. I got increasingly furious about this during the last seven years before my diagnosis, between 47 and 53 years of age.
Holden thank you so much for this! I'm sharing it with my long-time friends whose son was diagnosed with Aspergers when we went to Binkley Baptist preschool. He's all grown up, married, and is a math teacher. I still remember when I gave him every map I owned.
Absolutely fantastic article. Thank you for keeping curiosity at the front of your work and engaging in what could have been an extremely challenging conversation. These discussions and disagreements are necessary to progress. I believe, and have written about it in the Self-Advocate Survival Guide, that a holistic model is necessary, as it is the bridge or spectrum or continuum, whatever people want to call it, between the binary social and medical models of disability. We simply cannot exclude personal experience. Context matters in everything.
I'm so thankful that someone with such a strong command of the literature and such patience in artfully navigating a difference in perspective was the one to hold this conversation. Within Autism self-advocacy circles, these differences are so heavily politicized that it is hard to get to anything useful and informative. And you really did. Thankful for this piece and for you, Holden!
An interesting discussion with Uta Firth and enjoyed reading your article, especially as I have been thinking about writing to her regarding her recent change of tack (I remember meeting her during the 90’s when she was busy expanding the boundaries of our understanding of and diagnostic boundaries of autism. I’m not a fan of diagnosis or the medical model, especially as medicine can no longer claim to be a ‘pure’ science as it is corrupted by the interests of the pharmaceutical industry and capitalism. I have had a myriad of diagnoses over the years starting with minimal brain dysfunction as a young child (I was born in the late 50’s), but now I give doctors, especially psychiatrists, a very wide berth. However, for the past couple of decades I have self identified as autistic (social model) and this has kinda helped me make sense of my life as well as helping me navigate life on a day to day basis. In terms of the resources question, in reality people who are late diagnosed get offered little or no support post diagnosis, and limited support is given to level 1 autistic kids in school (with many not even accessing a school placement but being home schooled by a parent), so maybe the wider autistic community are just being blamed for the state’s failure to properly fund and resource services for more severely disabled (level 2-3) autistic children and adults.
Thank you for this article. I tend to agree with her take, specially with a lv3 nonverbal autistic child. The diagnosis being so vast in description does have real world implications for people with high support needs. Unfortunately I've come across this multiple times with my child. In the end the resources are finite.
Thank you for this article. As a low needs, later diagnosed female this discussion has made me question a lot recently. I can't really figure out how it all makes me feel 😅 but it's like that all too familiar ... then what am I? My sense of self feels weird. But then that's kind of my normal feeling anyways day to day so 🫠
Holden, this is a fabulously written and interesting piece. I certainly landed on your side of the argument after reading it- particularly the merging of social and medical models. Thank you!
Part of the reason I landed on your side is empirical. I spend time with 75 tier 1 and tier 2 autistic 4-12 graders every every week as part of my pet therapy work and serving on the board of the school. The variation in how autism presents itself among these 75 kids is huge. I mean the differences in the social presentation of behaviors between the autistic kids at the school is probably as large as the behavioral differences between the 75 autistic children vs a random sample of neurotypical children. That kind of variation is still very hard to explain in a medical model.
I would add that the Neurodiversity Paradigm is often misunderstood as a purely social model when it actually embraces the medical model in the sense of medication being taken to support the neurodivergent person. As for masking, Frith is wrong, and peer-reviewed research supports this.
It is good that she has rowed back on her comments about Chris Packham, but her imput has been damaging to those of us who are late diagnosed partly because we have masked for decades and are not little white boys.
Whilst this very well written article does add nuance to the discussion, the damage remains. Research develops and new knowledge is added all the time, some of which will challenge what has gone before. That is how it is. What Emeritus Professors need to do is acknowledge their past contribution, but also have the grace to move aside for the current crop of peer - reviewed and well respected researchers and not disrespect the work of the last 2 decades.
I appreciate this. My 17-year-old daughter is Level 1 autistic, and I am almost ashamed to mention this to people whose children are Level 2 or 3. But there is no other way to explain her needs, behaviors, and way of encountering the world—especially other people—than that she is autistic. Since the diagnosis, she has been able to access more support in school than ever. Before diagnosis, she was a behavior problem. Now, she gets support.
What an excellent article, I applaud both of you. Getting into real discussion with people we disagree with is the foundation of civilised progress.
Strongly agree that social and medical models both useful. I wrote an article describing one possible way to reconcile these in neurodevelopmental conditions, a ‘doorframes’ model of disability, I believe this is the way of thinking about this which would defuse these arguments. The traits are real and in us, like height. Difficulties are real and experienced by some, when we hit our heads on a doorframe. Where to draw the line is contentious because the difficulty is in the *interaction* - one person can fail in one environment and thrive in another.
https://ainsworld.wordpress.com/2025/01/05/a-better-way-to-think-about-neurodiversity-the-doorframes-model-of-disability/
Some of us were diagnosed late less because are masking per se and more because no one was diagnosing in the 1960s 70s my case southern Africa. So I beg beg beg for diagnosis. I begged and tried to figure out what was going on with me. Nobody could tell me. I got increasingly furious about this during the last seven years before my diagnosis, between 47 and 53 years of age.
I want to follow you more, Holden.
Holden thank you so much for this! I'm sharing it with my long-time friends whose son was diagnosed with Aspergers when we went to Binkley Baptist preschool. He's all grown up, married, and is a math teacher. I still remember when I gave him every map I owned.
Absolutely fantastic article. Thank you for keeping curiosity at the front of your work and engaging in what could have been an extremely challenging conversation. These discussions and disagreements are necessary to progress. I believe, and have written about it in the Self-Advocate Survival Guide, that a holistic model is necessary, as it is the bridge or spectrum or continuum, whatever people want to call it, between the binary social and medical models of disability. We simply cannot exclude personal experience. Context matters in everything.
I'm so thankful that someone with such a strong command of the literature and such patience in artfully navigating a difference in perspective was the one to hold this conversation. Within Autism self-advocacy circles, these differences are so heavily politicized that it is hard to get to anything useful and informative. And you really did. Thankful for this piece and for you, Holden!
An interesting discussion with Uta Firth and enjoyed reading your article, especially as I have been thinking about writing to her regarding her recent change of tack (I remember meeting her during the 90’s when she was busy expanding the boundaries of our understanding of and diagnostic boundaries of autism. I’m not a fan of diagnosis or the medical model, especially as medicine can no longer claim to be a ‘pure’ science as it is corrupted by the interests of the pharmaceutical industry and capitalism. I have had a myriad of diagnoses over the years starting with minimal brain dysfunction as a young child (I was born in the late 50’s), but now I give doctors, especially psychiatrists, a very wide berth. However, for the past couple of decades I have self identified as autistic (social model) and this has kinda helped me make sense of my life as well as helping me navigate life on a day to day basis. In terms of the resources question, in reality people who are late diagnosed get offered little or no support post diagnosis, and limited support is given to level 1 autistic kids in school (with many not even accessing a school placement but being home schooled by a parent), so maybe the wider autistic community are just being blamed for the state’s failure to properly fund and resource services for more severely disabled (level 2-3) autistic children and adults.
Thank you for this article. I tend to agree with her take, specially with a lv3 nonverbal autistic child. The diagnosis being so vast in description does have real world implications for people with high support needs. Unfortunately I've come across this multiple times with my child. In the end the resources are finite.
Thank you for this article. As a low needs, later diagnosed female this discussion has made me question a lot recently. I can't really figure out how it all makes me feel 😅 but it's like that all too familiar ... then what am I? My sense of self feels weird. But then that's kind of my normal feeling anyways day to day so 🫠
Thank you for sharing your experience and this analysis. I am looking forward to your book.