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"The Plight of Lower Functioning Autism in the Neuro-diverse World"
The neuro-diversity movement has been gaining popularity in recent years (1) but is also receiving attention of late for “dividing the autism community”(2, 3, 4). In promoting the idea of neuro-diversity, “higher functioning”, extremely verbal and often gifted, individuals “on the spectrum” wish to de-pathologize their cognitive, social and other differences. In rejecting the notion of their autism as a disease, they advocate instead for acceptance and respect for their differences. Some self-advocates for acceptance of neuro-diversity also stand opposed to research that views autism as a medical disability and that aims to determine its cause, and ways to prevent, treat or cure it. Instead, they advocate for environmental accommodations that would help minimize their exposure to situations that are challenging for them and would thus allow their own cognitive styles and special skills to flourish.
However, on the other side, there are individuals who are severely impacted by autism in all environments. Their severely incapacitating condition may include a complete lack of functional language and/or profound behavioral challenges. They and/or their families see the neuro-diversity movement as adding to a lack of awareness of and attention to their incredible daily struggles, and as discouraging research that has the potential for eliminating or helping to manage symptoms that are so disabling.
This divide was vividly portrayed recently in a blog by Alisa Opar that appeared in the Washington Post Health and Science Section in May 2019 (3). In describing the scope and depth of the neuro-diversity movement within the field of autism, the article also described negative attitudes that some advocates of neuro-diversity appear to hold toward individuals who are severely disabled by autism. For example, Opar quotes self-advocates who, in the context of championing the concept of neuro-diversity, are angry about the recent formation of a National Council on Severe Autism (NCSA)-- the first organization to advocate for publicity, research, funding and informed interventions and supports for those individuals with autism, and their families, who for so long have been literally and figuratively without a voice. According to Opar’s article, this anger about the NCSA is fueled by allegations by neuro-diversity advocates that the organization’s depictions of autism harm them, bring down their own image, “increase stigma and misunderstanding, and make life harder for everyone (i.e. amongst the neuro-diverse), including their families” (quoted in Opar 2019, page 4). This, they claim, is because the focus on the severely impaired advances depictions of autistic people “as burdens, as toxic and as catastrophes.” (quoted in Opar 2019, page 4)
I find these attitudes towards so-called “low functioning” people with autism deeply disturbing . They are not held by all advocates of neuro-diversity – see e.g, Robison (5). But when expressed, as described in Opar’s article, they contribute to and reinforce what has been, for decades now, a glaring absence of public or scholarly attention and discussion about individuals affected by severe autism, and their families (6). These individuals and their families have received virtually no mention, their stories and needs overshadowed by the spotlight on the lives and needs of “higher functioning” individuals. As recently described by Ginny Russell in Spectrum (7) this has had “concerning consequences” for our understanding of what autism is, and how best to respond to it and treat it, at all levels of severity.
In my experience, I have not heard families of children and adults with severe autism describe their situation with the language quoted by Opar. But that is not to deny the daily hardship and suffering endured by the individuals and/or their families living with this severe disability. All the more reason, then, and all the more need, for compassion, caring, research and help. However, it is not there. The individuals most severely impaired by autism not only do not have a voice, they are invisible. At conferences, in the media, and in research, it is as if they do not exist. This makes especially concerning the reports that some self-advocates who demand recognition and acceptance based on neuro-diversity are worried about genetic research, in particular fearing that it will lead to “selective abortions” and “genetic engineering” to eliminate autism. This position with regard to genetic research discredits and dismisses the very research that might actually be able to identify distinct subgroups within the extremely heterogeneous diagnosis of autistic spectrum disorder (2,8)—an outcome which in turn might lead to better understanding and treatment of severe communication and behavioral problems. Meanwhile, while expressing a fear of an eugenic element in genetic research, the fervent wish of these self-advocates not to be to associated in any way with autism as it appears in its more disabled forms might itself be interpreted as bearing a family resemblance to an eugenic way of thinking.
There is no denying that the social-emotional struggles of higher functioning persons with autism have often not been recognized and addressed, despite or perhaps precisely because of their skills and talents. One can certainly sympathize with their wish for acceptance and respect. And certainly, advocating for the concept of neuro-diversity did not cause the eclipse of severe autism, a state of affairs that was present and has been ongoing since well before the emergence of the neuro-diversity movement. To understand that state of affairs, one has to look at how autism is assessed and diagnosed; how this has changed over the years; how autism is publicized (specifically, regarding identification, treatment and treatment outcome) and how research studies are conducted.
Our assessment and diagnostic procedures have resulted in a new autism population heavily skewed toward so- called “higher functioning” autism. When first identified as a syndrome, the incidence of autism was reported to be 4 in 10, 000 compared to the 1 in 58 reported today. The four were those whose diagnosis was frightening and dreaded by parents. At that time, the diagnosis did not refer at all to the many bright, often gifted children and young adults who are diagnosed with ASD, today. As first postulated by Lorna Wing more than thirty years ago, the notion of a spectrum came with an acknowledgment that it shades into normalcy and/or normal eccentricity. However, in the current (DSM5) criteria for autism spectrum disorder, the illustrations of qualifying symptoms include some that are broad enough, and insufficiently specific to enable inclusion of “normal” variation well within the diagnosis of the disorder (e.g., “difficulty in making friends” offered as evidence of deficits in social-emotional reciprocity). It appears that the creators of the DSM5 and ADOS have made too little effort to remind users of their instruments that many of the symptoms and characteristics of ASD, as described in the DSM5 and ADOS , can exist for reasons and in disorders other than autism, and, in some variations, can appear in the course of normal development. The strong lobby for autism awareness does nothing to correct this situation. Look e.g., at the huge billboards that read: “Sensory sensitivity is a sign of autism!” -- as if you are likely to be autistic if you are uncomfortable with the feeling of tags on your neck, one of the frequently cited examples of sensory sensitivity.
Meanwhile the tremendous exposure of the public to descriptions of autistic symptoms, combined with the barrage of warnings in the media about early signs and the critical need for early (and never too early) intervention to insure a positive outcome, has made a generation of parents vigilant for anything that seems to fulfill the criteria for an ASD diagnosis. It has also made them “fluent” in the language of autism, increasing the likelihood that they will use autistic terminology to describe any concerns or problems they might have in raising their toddler. So, for example, I have read reports in which the toddler who has a tantrum when his favorite toy is taken away, or who does not want to go to bed, has raised parental anxiety and resulted in a referral to a psychologist or medical professional about his “problem with transitions”; kids whose language may pick up only after 18 months or even not until two (as is the case with many typically developing children) are identified as having a language delay or disorder; a toddler’s love of Thomas the Tank Engine, or attachment to his blankie are reported as evidence of ritualistic or repetitive behaviors; a preschooler’s insistence on eating only pizza, chicken McNuggets and French fries is endorsed as evidence of “sensory issues”. Recently, l read an assessment report in which the observation that a child liked to finish one task before starting another was provided to illustrate his “ritualistic behavior” . This tendency to pathologize “normal” behavior is unfortunately accepted and shared by clinicians anxious to have their patients fulfill the DSM5 criteria so that they can get services for them. The ticket that diagnosis offers for services is within easy reach when developmentally normal behaviors are pathologized as qualifying symptoms of autism.
Of course, proper early diagnosis and intervention has been hugely helpful to many children. But based on the hundreds of psychological assessment reports I read every year, written by different practitioners and from different agencies, I feel certain that the stuffing of normal phenomena into the diagnostic criteria goes on with great frequency, ever expanding the prevalence estimates of ASD to include individuals with relatively little adaptive impairment or without any behaviors which, as specified (and as required) in earlier DSM criteria, are qualitatively different from normal.
All of this contributes to a clinical population of ASD that is skewed more and more towards “high functioning” autism. What, then, about the children, adolescents and adults who are severely impaired by autism? How do they figure in the new statistics? Are their numbers, in fact, in decline, now, as a result of early identification and intervention? That is an empirical question to which it is well worth directing attention. However, whether or not that is the case, that there is so little mention of severe autism in the media and at conferences contributes to a current view of the diagnosis, offered to the public, that is less devastating, less deviant and atypical, and far more hopeful than earlier believed. When paired with the promotion of early reporting and intervention as the key to positive outcome, it likely increases the incidence of referrals for assessment, including many who present with very mild evidence of an ASD.
With respect to research, lower functioning individuals have been largely excluded from studies, from early on, because only individuals who can talk and/or understand and follow instructions could be included in experiments. Meanwhile, for the reasons just described, the milder forms of autism included in research studies now stretch further away from the pathology originally identified as autistic. This skewing of the clinical population towards ever higher functioning individuals makes it difficult to interpret research findings. As Russell ](7) describes, authors of research papers tend to ascribe their results to “autism” or the autistic spectrum as a whole, rarely acknowledging that they may not be representative of the groups of individuals who were excluded from the study by virtue of being non-verbal or minimally verbal; too behaviorally disturbed and/or scoring low on intelligence tests. This imbalance in subjects for research impedes progress in understanding what autism is, and the discovery of how to assess and treat the different clinical presentations now diagnosed as “ on the spectrum”.
The exclusion of lower functioning individuals in research is also associated with a wrongful assumption that “lower functioning” is always due to and/or is a reflection of intellectual disability. Thus, in addition to their not being able to participate in experiments, the rationale for exclusion of these individuals may be that it creates a purely autistic group for study, the results of which can be attributed solely to autism and not be confounded by intellectual disability. This line of thinking however, risks misrepresenting and further marginalizing severe autism -- first, because it reflects the assumption that all “lower functioning “ autistic individuals (non – or minimally verbal and/or severely behaviorally impaired) are necessarily seriously intellectually disabled; and secondly, because it ignores the disconcerting fact that we really know virtually nothing about the cognition of autistic individuals who have little or no language and/or exhibit behaviors that prevent assessment by conventional techniques. We have not invested sufficiently in attempting to devise alternative tools and methodologies that might allow access to and assessment of the abilities of these individuals and that also tap into skills they may have that are not represented on conventional tests (9). It is interesting, in fact, that so little attention is given to the possibility of different cognitive styles and skills in autism. Note, for example, that despite the fact that the earliest research into autism tended to describe distinctive characteristics of cognition, all generations of the DSM have never included reference to specific cognitive factors in autism.
Unless the lower functioning half of the spectrum is studied, we cannot hope to understand what is autism and what it is not. We cannot determine whether there is indeed a common autistic core that is shared by the variety of clinical presentations currently embraced by the autism spectrum or whether we are dealing instead with distinct and separate syndromes, with different neurological, genetic, cognitive and behavioral characteristics. To gain knowledge about the causes and implications of the characteristics of what may be distinct and separate syndromes or subgroups means we must struggle with the problem of devising research designs that will allow inclusion of subjects who are more severely disabled. It will mean finding and creating alternative means for assessment of these individuals. It goes without saying that this line of research may well have the potential to lead to better approaches for ameliorating or managing symptoms that are especially disabling.
Ironically, research that may identify discrete syndromes within the “autism spectrum” as it is conceptualized today would likely substantiate what may be a valid criticism of the autism spectrum diagnosis implied within the neuro-diverse community's insistence that they not be spoken of in the same breath as their more impaired autistic cousins. They are asking: Is there really a spectrum that ranges from the mute, possibly non-verbal [i.e., as well as just without speech]); head-banging, self abusive , distressed and/or aggressive individual to the successful Silicon Valley nerd or the autistic kid working with federal agencies to identify cyber threats? The notion of a spectrum conjures images of a rainbow, which while having different colors, is yet defined by a progressive series of gradual gradations in one characteristic (i.e., in the rainbow, the different degrees of refraction of light). But we do not have evidence to support the notion that the autism spectrum as diagnosed today reflects different and measureable degrees on a single common core dimension. Nor can we claim evidence that it reflects a gradient of severity levels on just one dimension. Just how to interpret or define the spectrum still remains to be better understood – which dimensions should be represented in it, and at what point are they “pathology” versus variations of “normalcy” (10).
As a corollary to this, we must also ask: are we prescribing the right treatment interventions and supports for all individuals diagnosed as “on the spectrum”. Many applaud, and rightly so, the belated recognition of the social, communication, and mental health needs of higher functioning individuals now diagnosed as “on the spectrum”. Admission into the ranks of ASD provides a ticket for treatment. However, identifying, finding and funding appropriate treatment and resources has not caught up with diagnosis. Once acquiring the "on the spectrum “ diagnosis, the “high functioning” child or young adult will likely have a prescription for ABA and/or social skills training. Yet these interventions, typically applied to an earlier face of autism, may not be appropriate for these individuals. The child or young adult with an IQ of 150 who, rather than going to birthday parties or hobnobbing with peers at social and sports events, prefers to read and play chess or focus on an area of special interest (typically pathologized as excessive preoccupation} may not necessarily need ABA or want social skills training!! The kinds of supports and services needed more likely would address concerns such as dealing with bullying, mental health concerns, educational, vocational , and/or residential needs. All the more reason for identifying subgroups and refining our understanding of their individual treatment needs.
One might wonder: why are people who have experienced the discomfort of feeling different; and of not “fitting in”, so quick to cast aspersion on another group. It would be a cheap shot to say, well, they are after all ”autistic” and so do not have empathy. That is, that to not feel compassion with respect to the struggles of the lower functioning individual is a consequence of characteristics associated with autism, even in highly intelligent and perceptive autistic individuals. I suppose herein lies another empirical question to be addressed. In the meantime, I would hold onto the possibility that there are many self –advocates and/or supporters of the concept of neuro-diversity (e.g. Robison (5) who are able to see that their own need for acceptance and recognition does not mean denying it to others. And that contrary to the respect they assume will be achieved by divorcing themselves from the more severely disabled, advocates of neuro–diversity would likely gain in respect, to the extent to which they show concern and tolerance for those more severely disabled by an autistic condition.
In sympathy with advocates of neuro-diversity, we might also consider extending the concept of “normal” or “typical” (or gifted or eccentric) rather than extending the reach of the diagnosis of autism. But those who need services and seek and /or accept the designation (diagnosis) of autistic in order to get them, need to be willing to share the platform with others who are more or differently disabled. In short, if the champions of neuro-diversity wish to retain their diagnosis of autistic while fighting for acceptance, integration and respect, then they should stand with and besides all others so diagnosed, in advocating for the rights and needs of all “on the spectrum“. Until proven otherwise, severely impaired autistic individuals still are, as they were from the start and always have been, one of the faces of autism. They are not to be hidden, but seen and served.
Ultimately, of course, this comes down to dividing the pie. The provision of services and research has to be extended to all groups, not just to the most articulate people with social, cognitive and linguistic differences who can, with some support, contribute to society, show great talent, and find a role in technology, science, politics and the arts. These individuals are to be welcomed and applauded for their efforts to work with their differences and cope with misunderstanding and lack of acceptance. But the lion’s share of resources, attention and research appears to go to these individuals and, given limitations in the resources, it will have to be at the expense of other groups, including the most severely impaired autistic. Those who are more fortunate would like to be recognized as capable of empathy and as endorsing diversity. But antagonism towards an organization dedicated to helping those most severely affected by autism reveals a lack of empathy and to deny attention and advocacy to those less endowed with speech, communication, and the capacity and/or experience of play and joy, shows little respect for diversity.
Finally, perhaps the view described in the Washington Post article is that of a very small minority of the neuro-diversity self-advocates. If so, hopefully, that article and my response to it, will bring forth from the neuro-diverse community a strong negation of the picture we have painted, and arguments to demonstrate that their viewpoint has been wrongfully portrayed. An open discussion of the issues raised by Opar and this response to her article would be a service to all groups. As concluded by Opar, “Any kind of truce in the autism wars will probably require both sides to take a perspective that encompasses all of the spectrum where the fight is for the happiness and well being of all autistic people, rather than over who is right” (page 8).
1 NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman and Oliver Sacks | Avery Press, Aug 25 2015
2 Response to Neurotribes – Travis Edward Breeding, Create Space Independent Publishing Platform; 1 edition (Oct. 11 2017)
3 Opar, Alisa (2019), A medical condition or just a difference? The question roils autism Community, The Washington Post, Health and Science, May 5, 2019 , www.washingtonpost.com/health-science/a-medical-c….17e-6845-11e9-8985-4cf30147bdca_story.hyml?utm_term=.c783a3aecf26
4 Baron-Cohen (2019) The Concept of Neurodiversity Is Dividing the Autism Community, Scientific American Blog, Springer Nature America, Inc, April 30, 2019
5 John Elder Robison (2013) My Life With Asperger's: What is Neurodiversity? Blog Posted Oct 07, 2013
6 Eagle, R (2002) The “other” non-verbal, severely retarded and/or more severely affected individuals with autism spectrum disorders. JADD, volume 30,Number 2.
7 Russell, G.. intellectual disability often excluded in studies. Spectrum , Viewpoint, May 21,2019 www.spectrumnews.org/opinion/viewpoint/autistic-people-people-intellectual-disability-often-excluded-studies/
8 Shafall S. Jeste and Daniel H. Gerschwing Nat Rev Neurol. 2014, Feb 19(2) 74-81 In this review, the authors discuss how some of the latest advances in the genetics of ASD in the first decade and a half of the 21st century have facilitated parsing of the heterogeneity of the disorder by identifying many genetic factors that increase the risk of ASD and that might shed light on more homogeneous subgroups within the spectrum. (They) argue that “only through such advances will we be able to define endophenotypes that can benefit from targeted, hypothesis-driven treatments. …..The rapid advances in genetics have facilitated an understanding of developmental trajectories, comorbidities and biological mechanisms underlying the deficits in ASD which, in turn, will open to door to the development of more mechanism-based phenotype specific treatment for these children”.
See also October 2017 Science Daily: re findings presented at American Society of Human Genetics 2018 in San Diego “Researchers have identified 102 genes associated with ASD and report significant progress toward teasing apart the genes associated with ASD”.
9 Eagle, R. S. 2002 Accessing and assessing intelligence in individuals with lower-functioning autism, Journal of Developmental Disabilities, Fall, p. 45-53. (This entire special edition of the Journal was devoted to papers presented at the Eclipse Conference, in Toronto, Canada. I organized the conference (with Dr. Maire Percy) to bring attention to the total shadow cast over autism in its most severe and disabling forms
10 The Dictionary says “spectrum” can refer to a range, gamut, sweep, scope, or span; as in a range of political beliefs or a range of different religion or races. So understood, the autistic spectrum would be composed of discrete, highly individual entities (subgroups!), each with a specific identity (as e.g., in the case of religion: Christianity, Judaism, Islam, Hindu, Buddhism etc.) . While these share in common that there are in the same category they cannot be placed at different points on a single gradient. It is an open question whether the current range of disorders now included in the spectrum are even all in the same category. Once again, to determine whether and if so what, they all have in common despite their otherwise unique characteristics, research cannot be limited to only one end of the spectrum.
However, on the other side, there are individuals who are severely impacted by autism in all environments. Their severely incapacitating condition may include a complete lack of functional language and/or profound behavioral challenges. They and/or their families see the neuro-diversity movement as adding to a lack of awareness of and attention to their incredible daily struggles, and as discouraging research that has the potential for eliminating or helping to manage symptoms that are so disabling.
This divide was vividly portrayed recently in a blog by Alisa Opar that appeared in the Washington Post Health and Science Section in May 2019 (3). In describing the scope and depth of the neuro-diversity movement within the field of autism, the article also described negative attitudes that some advocates of neuro-diversity appear to hold toward individuals who are severely disabled by autism. For example, Opar quotes self-advocates who, in the context of championing the concept of neuro-diversity, are angry about the recent formation of a National Council on Severe Autism (NCSA)-- the first organization to advocate for publicity, research, funding and informed interventions and supports for those individuals with autism, and their families, who for so long have been literally and figuratively without a voice. According to Opar’s article, this anger about the NCSA is fueled by allegations by neuro-diversity advocates that the organization’s depictions of autism harm them, bring down their own image, “increase stigma and misunderstanding, and make life harder for everyone (i.e. amongst the neuro-diverse), including their families” (quoted in Opar 2019, page 4). This, they claim, is because the focus on the severely impaired advances depictions of autistic people “as burdens, as toxic and as catastrophes.” (quoted in Opar 2019, page 4)
I find these attitudes towards so-called “low functioning” people with autism deeply disturbing . They are not held by all advocates of neuro-diversity – see e.g, Robison (5). But when expressed, as described in Opar’s article, they contribute to and reinforce what has been, for decades now, a glaring absence of public or scholarly attention and discussion about individuals affected by severe autism, and their families (6). These individuals and their families have received virtually no mention, their stories and needs overshadowed by the spotlight on the lives and needs of “higher functioning” individuals. As recently described by Ginny Russell in Spectrum (7) this has had “concerning consequences” for our understanding of what autism is, and how best to respond to it and treat it, at all levels of severity.
In my experience, I have not heard families of children and adults with severe autism describe their situation with the language quoted by Opar. But that is not to deny the daily hardship and suffering endured by the individuals and/or their families living with this severe disability. All the more reason, then, and all the more need, for compassion, caring, research and help. However, it is not there. The individuals most severely impaired by autism not only do not have a voice, they are invisible. At conferences, in the media, and in research, it is as if they do not exist. This makes especially concerning the reports that some self-advocates who demand recognition and acceptance based on neuro-diversity are worried about genetic research, in particular fearing that it will lead to “selective abortions” and “genetic engineering” to eliminate autism. This position with regard to genetic research discredits and dismisses the very research that might actually be able to identify distinct subgroups within the extremely heterogeneous diagnosis of autistic spectrum disorder (2,8)—an outcome which in turn might lead to better understanding and treatment of severe communication and behavioral problems. Meanwhile, while expressing a fear of an eugenic element in genetic research, the fervent wish of these self-advocates not to be to associated in any way with autism as it appears in its more disabled forms might itself be interpreted as bearing a family resemblance to an eugenic way of thinking.
There is no denying that the social-emotional struggles of higher functioning persons with autism have often not been recognized and addressed, despite or perhaps precisely because of their skills and talents. One can certainly sympathize with their wish for acceptance and respect. And certainly, advocating for the concept of neuro-diversity did not cause the eclipse of severe autism, a state of affairs that was present and has been ongoing since well before the emergence of the neuro-diversity movement. To understand that state of affairs, one has to look at how autism is assessed and diagnosed; how this has changed over the years; how autism is publicized (specifically, regarding identification, treatment and treatment outcome) and how research studies are conducted.
Our assessment and diagnostic procedures have resulted in a new autism population heavily skewed toward so- called “higher functioning” autism. When first identified as a syndrome, the incidence of autism was reported to be 4 in 10, 000 compared to the 1 in 58 reported today. The four were those whose diagnosis was frightening and dreaded by parents. At that time, the diagnosis did not refer at all to the many bright, often gifted children and young adults who are diagnosed with ASD, today. As first postulated by Lorna Wing more than thirty years ago, the notion of a spectrum came with an acknowledgment that it shades into normalcy and/or normal eccentricity. However, in the current (DSM5) criteria for autism spectrum disorder, the illustrations of qualifying symptoms include some that are broad enough, and insufficiently specific to enable inclusion of “normal” variation well within the diagnosis of the disorder (e.g., “difficulty in making friends” offered as evidence of deficits in social-emotional reciprocity). It appears that the creators of the DSM5 and ADOS have made too little effort to remind users of their instruments that many of the symptoms and characteristics of ASD, as described in the DSM5 and ADOS , can exist for reasons and in disorders other than autism, and, in some variations, can appear in the course of normal development. The strong lobby for autism awareness does nothing to correct this situation. Look e.g., at the huge billboards that read: “Sensory sensitivity is a sign of autism!” -- as if you are likely to be autistic if you are uncomfortable with the feeling of tags on your neck, one of the frequently cited examples of sensory sensitivity.
Meanwhile the tremendous exposure of the public to descriptions of autistic symptoms, combined with the barrage of warnings in the media about early signs and the critical need for early (and never too early) intervention to insure a positive outcome, has made a generation of parents vigilant for anything that seems to fulfill the criteria for an ASD diagnosis. It has also made them “fluent” in the language of autism, increasing the likelihood that they will use autistic terminology to describe any concerns or problems they might have in raising their toddler. So, for example, I have read reports in which the toddler who has a tantrum when his favorite toy is taken away, or who does not want to go to bed, has raised parental anxiety and resulted in a referral to a psychologist or medical professional about his “problem with transitions”; kids whose language may pick up only after 18 months or even not until two (as is the case with many typically developing children) are identified as having a language delay or disorder; a toddler’s love of Thomas the Tank Engine, or attachment to his blankie are reported as evidence of ritualistic or repetitive behaviors; a preschooler’s insistence on eating only pizza, chicken McNuggets and French fries is endorsed as evidence of “sensory issues”. Recently, l read an assessment report in which the observation that a child liked to finish one task before starting another was provided to illustrate his “ritualistic behavior” . This tendency to pathologize “normal” behavior is unfortunately accepted and shared by clinicians anxious to have their patients fulfill the DSM5 criteria so that they can get services for them. The ticket that diagnosis offers for services is within easy reach when developmentally normal behaviors are pathologized as qualifying symptoms of autism.
Of course, proper early diagnosis and intervention has been hugely helpful to many children. But based on the hundreds of psychological assessment reports I read every year, written by different practitioners and from different agencies, I feel certain that the stuffing of normal phenomena into the diagnostic criteria goes on with great frequency, ever expanding the prevalence estimates of ASD to include individuals with relatively little adaptive impairment or without any behaviors which, as specified (and as required) in earlier DSM criteria, are qualitatively different from normal.
All of this contributes to a clinical population of ASD that is skewed more and more towards “high functioning” autism. What, then, about the children, adolescents and adults who are severely impaired by autism? How do they figure in the new statistics? Are their numbers, in fact, in decline, now, as a result of early identification and intervention? That is an empirical question to which it is well worth directing attention. However, whether or not that is the case, that there is so little mention of severe autism in the media and at conferences contributes to a current view of the diagnosis, offered to the public, that is less devastating, less deviant and atypical, and far more hopeful than earlier believed. When paired with the promotion of early reporting and intervention as the key to positive outcome, it likely increases the incidence of referrals for assessment, including many who present with very mild evidence of an ASD.
With respect to research, lower functioning individuals have been largely excluded from studies, from early on, because only individuals who can talk and/or understand and follow instructions could be included in experiments. Meanwhile, for the reasons just described, the milder forms of autism included in research studies now stretch further away from the pathology originally identified as autistic. This skewing of the clinical population towards ever higher functioning individuals makes it difficult to interpret research findings. As Russell ](7) describes, authors of research papers tend to ascribe their results to “autism” or the autistic spectrum as a whole, rarely acknowledging that they may not be representative of the groups of individuals who were excluded from the study by virtue of being non-verbal or minimally verbal; too behaviorally disturbed and/or scoring low on intelligence tests. This imbalance in subjects for research impedes progress in understanding what autism is, and the discovery of how to assess and treat the different clinical presentations now diagnosed as “ on the spectrum”.
The exclusion of lower functioning individuals in research is also associated with a wrongful assumption that “lower functioning” is always due to and/or is a reflection of intellectual disability. Thus, in addition to their not being able to participate in experiments, the rationale for exclusion of these individuals may be that it creates a purely autistic group for study, the results of which can be attributed solely to autism and not be confounded by intellectual disability. This line of thinking however, risks misrepresenting and further marginalizing severe autism -- first, because it reflects the assumption that all “lower functioning “ autistic individuals (non – or minimally verbal and/or severely behaviorally impaired) are necessarily seriously intellectually disabled; and secondly, because it ignores the disconcerting fact that we really know virtually nothing about the cognition of autistic individuals who have little or no language and/or exhibit behaviors that prevent assessment by conventional techniques. We have not invested sufficiently in attempting to devise alternative tools and methodologies that might allow access to and assessment of the abilities of these individuals and that also tap into skills they may have that are not represented on conventional tests (9). It is interesting, in fact, that so little attention is given to the possibility of different cognitive styles and skills in autism. Note, for example, that despite the fact that the earliest research into autism tended to describe distinctive characteristics of cognition, all generations of the DSM have never included reference to specific cognitive factors in autism.
Unless the lower functioning half of the spectrum is studied, we cannot hope to understand what is autism and what it is not. We cannot determine whether there is indeed a common autistic core that is shared by the variety of clinical presentations currently embraced by the autism spectrum or whether we are dealing instead with distinct and separate syndromes, with different neurological, genetic, cognitive and behavioral characteristics. To gain knowledge about the causes and implications of the characteristics of what may be distinct and separate syndromes or subgroups means we must struggle with the problem of devising research designs that will allow inclusion of subjects who are more severely disabled. It will mean finding and creating alternative means for assessment of these individuals. It goes without saying that this line of research may well have the potential to lead to better approaches for ameliorating or managing symptoms that are especially disabling.
Ironically, research that may identify discrete syndromes within the “autism spectrum” as it is conceptualized today would likely substantiate what may be a valid criticism of the autism spectrum diagnosis implied within the neuro-diverse community's insistence that they not be spoken of in the same breath as their more impaired autistic cousins. They are asking: Is there really a spectrum that ranges from the mute, possibly non-verbal [i.e., as well as just without speech]); head-banging, self abusive , distressed and/or aggressive individual to the successful Silicon Valley nerd or the autistic kid working with federal agencies to identify cyber threats? The notion of a spectrum conjures images of a rainbow, which while having different colors, is yet defined by a progressive series of gradual gradations in one characteristic (i.e., in the rainbow, the different degrees of refraction of light). But we do not have evidence to support the notion that the autism spectrum as diagnosed today reflects different and measureable degrees on a single common core dimension. Nor can we claim evidence that it reflects a gradient of severity levels on just one dimension. Just how to interpret or define the spectrum still remains to be better understood – which dimensions should be represented in it, and at what point are they “pathology” versus variations of “normalcy” (10).
As a corollary to this, we must also ask: are we prescribing the right treatment interventions and supports for all individuals diagnosed as “on the spectrum”. Many applaud, and rightly so, the belated recognition of the social, communication, and mental health needs of higher functioning individuals now diagnosed as “on the spectrum”. Admission into the ranks of ASD provides a ticket for treatment. However, identifying, finding and funding appropriate treatment and resources has not caught up with diagnosis. Once acquiring the "on the spectrum “ diagnosis, the “high functioning” child or young adult will likely have a prescription for ABA and/or social skills training. Yet these interventions, typically applied to an earlier face of autism, may not be appropriate for these individuals. The child or young adult with an IQ of 150 who, rather than going to birthday parties or hobnobbing with peers at social and sports events, prefers to read and play chess or focus on an area of special interest (typically pathologized as excessive preoccupation} may not necessarily need ABA or want social skills training!! The kinds of supports and services needed more likely would address concerns such as dealing with bullying, mental health concerns, educational, vocational , and/or residential needs. All the more reason for identifying subgroups and refining our understanding of their individual treatment needs.
One might wonder: why are people who have experienced the discomfort of feeling different; and of not “fitting in”, so quick to cast aspersion on another group. It would be a cheap shot to say, well, they are after all ”autistic” and so do not have empathy. That is, that to not feel compassion with respect to the struggles of the lower functioning individual is a consequence of characteristics associated with autism, even in highly intelligent and perceptive autistic individuals. I suppose herein lies another empirical question to be addressed. In the meantime, I would hold onto the possibility that there are many self –advocates and/or supporters of the concept of neuro-diversity (e.g. Robison (5) who are able to see that their own need for acceptance and recognition does not mean denying it to others. And that contrary to the respect they assume will be achieved by divorcing themselves from the more severely disabled, advocates of neuro–diversity would likely gain in respect, to the extent to which they show concern and tolerance for those more severely disabled by an autistic condition.
In sympathy with advocates of neuro-diversity, we might also consider extending the concept of “normal” or “typical” (or gifted or eccentric) rather than extending the reach of the diagnosis of autism. But those who need services and seek and /or accept the designation (diagnosis) of autistic in order to get them, need to be willing to share the platform with others who are more or differently disabled. In short, if the champions of neuro-diversity wish to retain their diagnosis of autistic while fighting for acceptance, integration and respect, then they should stand with and besides all others so diagnosed, in advocating for the rights and needs of all “on the spectrum“. Until proven otherwise, severely impaired autistic individuals still are, as they were from the start and always have been, one of the faces of autism. They are not to be hidden, but seen and served.
Ultimately, of course, this comes down to dividing the pie. The provision of services and research has to be extended to all groups, not just to the most articulate people with social, cognitive and linguistic differences who can, with some support, contribute to society, show great talent, and find a role in technology, science, politics and the arts. These individuals are to be welcomed and applauded for their efforts to work with their differences and cope with misunderstanding and lack of acceptance. But the lion’s share of resources, attention and research appears to go to these individuals and, given limitations in the resources, it will have to be at the expense of other groups, including the most severely impaired autistic. Those who are more fortunate would like to be recognized as capable of empathy and as endorsing diversity. But antagonism towards an organization dedicated to helping those most severely affected by autism reveals a lack of empathy and to deny attention and advocacy to those less endowed with speech, communication, and the capacity and/or experience of play and joy, shows little respect for diversity.
Finally, perhaps the view described in the Washington Post article is that of a very small minority of the neuro-diversity self-advocates. If so, hopefully, that article and my response to it, will bring forth from the neuro-diverse community a strong negation of the picture we have painted, and arguments to demonstrate that their viewpoint has been wrongfully portrayed. An open discussion of the issues raised by Opar and this response to her article would be a service to all groups. As concluded by Opar, “Any kind of truce in the autism wars will probably require both sides to take a perspective that encompasses all of the spectrum where the fight is for the happiness and well being of all autistic people, rather than over who is right” (page 8).
1 NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman and Oliver Sacks | Avery Press, Aug 25 2015
2 Response to Neurotribes – Travis Edward Breeding, Create Space Independent Publishing Platform; 1 edition (Oct. 11 2017)
3 Opar, Alisa (2019), A medical condition or just a difference? The question roils autism Community, The Washington Post, Health and Science, May 5, 2019 , www.washingtonpost.com/health-science/a-medical-c….17e-6845-11e9-8985-4cf30147bdca_story.hyml?utm_term=.c783a3aecf26
4 Baron-Cohen (2019) The Concept of Neurodiversity Is Dividing the Autism Community, Scientific American Blog, Springer Nature America, Inc, April 30, 2019
5 John Elder Robison (2013) My Life With Asperger's: What is Neurodiversity? Blog Posted Oct 07, 2013
6 Eagle, R (2002) The “other” non-verbal, severely retarded and/or more severely affected individuals with autism spectrum disorders. JADD, volume 30,Number 2.
7 Russell, G.. intellectual disability often excluded in studies. Spectrum , Viewpoint, May 21,2019 www.spectrumnews.org/opinion/viewpoint/autistic-people-people-intellectual-disability-often-excluded-studies/
8 Shafall S. Jeste and Daniel H. Gerschwing Nat Rev Neurol. 2014, Feb 19(2) 74-81 In this review, the authors discuss how some of the latest advances in the genetics of ASD in the first decade and a half of the 21st century have facilitated parsing of the heterogeneity of the disorder by identifying many genetic factors that increase the risk of ASD and that might shed light on more homogeneous subgroups within the spectrum. (They) argue that “only through such advances will we be able to define endophenotypes that can benefit from targeted, hypothesis-driven treatments. …..The rapid advances in genetics have facilitated an understanding of developmental trajectories, comorbidities and biological mechanisms underlying the deficits in ASD which, in turn, will open to door to the development of more mechanism-based phenotype specific treatment for these children”.
See also October 2017 Science Daily: re findings presented at American Society of Human Genetics 2018 in San Diego “Researchers have identified 102 genes associated with ASD and report significant progress toward teasing apart the genes associated with ASD”.
9 Eagle, R. S. 2002 Accessing and assessing intelligence in individuals with lower-functioning autism, Journal of Developmental Disabilities, Fall, p. 45-53. (This entire special edition of the Journal was devoted to papers presented at the Eclipse Conference, in Toronto, Canada. I organized the conference (with Dr. Maire Percy) to bring attention to the total shadow cast over autism in its most severe and disabling forms
10 The Dictionary says “spectrum” can refer to a range, gamut, sweep, scope, or span; as in a range of political beliefs or a range of different religion or races. So understood, the autistic spectrum would be composed of discrete, highly individual entities (subgroups!), each with a specific identity (as e.g., in the case of religion: Christianity, Judaism, Islam, Hindu, Buddhism etc.) . While these share in common that there are in the same category they cannot be placed at different points on a single gradient. It is an open question whether the current range of disorders now included in the spectrum are even all in the same category. Once again, to determine whether and if so what, they all have in common despite their otherwise unique characteristics, research cannot be limited to only one end of the spectrum.
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