When I hear the word “neurodiversity,” I immediately become concerned that it will be dismissed as simply another form of “political correctness,” and not seen as encompassing a wide variety of serious issues that affect virtually everyone in the Asperger Syndrome / autism spectrum community. As such, I fear that the very idea will not be taken as seriously as it should be. I am especially worried by the proliferating idea that autism is merely an excuse to justify and allow inappropriate behavior in public. Even with the improved public awareness of the broader autism spectrum that has come about in recent years, there are many issues of acceptance and inclusion that still need to be addressed. Much as society has made significant progress concerning racial, ethnic, religious, gender, sexual orientation, and other identities, I find it telling that people I have known who are both on the autism spectrum and in these categories (including myself – I am Hispanic even though you would never know this from my name!) feel that they have been marginalized, excluded, and generally suffered more for their autism (directly or indirectly) than for the other category; this to me indicates how much further society still has to go in this regard. Neurodiversity issues are present in the school, workplace, community, and just about any social group including the family.
One of the greatest obstacles to acceptance and inclusion of autistics in our society is the dramatic explosion of “hidden curricula” that has occurred over recent times – by this I refer to the collection of social and societal “rules” that everyone is expected to follow but are not explicitly taught or even stated. Autistics, who have difficulty with things that are not articulated in a literal manner, are at a great disadvantage here. This is not to say that autistics should always be excused from adherence to all such rules (although many are completely arbitrary and even pointless), simply that their inability to “pick them up” as easily as the typical population does needs to be recognized within their communities and by society as a whole, and allowances must be made for such.
Hidden curricula need to be explained to nearly everyone on the autism spectrum in as literal, explicit, and unambiguous a manner as possible. This, in fact, may not be as easy as it might seem. Even those autistics who are “rule followers” can easily misinterpret the real meanings of such rules, especially when they take them too literally. Others who might understand the rules may still not fully appreciate the effects of not following them on others, given the theory-of-mind deficits so common in autistics, and thus not take them as seriously as they should. Consequently, not only do hidden curricula need to be articulated, but their underlying reasons need to be expounded upon until they are fully understood; in particular, the consequences of not following them need to be made very clear. All of this can go a long way towards the goal of promoting the acceptance and inclusion of autistics by society. At least, though, this is one instance where autistics can be directly helped to improve their situation; in many others, they will need to depend upon greater tolerance on the part of society.
Many of the social difficulties encountered by autistics involve their inability to communicate effectively, fixation on specialized and unusual interests, obliviousness to things that are readily perceived by most people, and sensory sensitivity issues, among other things. Once again, society needs to be made aware of these challenges so that they can be accommodated wherever possible, and allowances made for such when necessary. This must be done in schools, workplaces, communities, and throughout society.
The easiest of these to deal with is probably the intense special interests. Although an autistic person with such interests may seem “odd,” their focus on and ability in their unusual area is also a positive trait that, under the right circumstances, can be of (perhaps great) value to others, to their community, and possibly even to society. Rather than marginalize such individuals simply because their interests do not conform to more conventional ones such as entertainment, sports, or fashion (although a few autistics do manage to attain encyclopedic expertise in these areas when they are so inclined), finding situations where their talents can be put to use is an accommodation that costs very little yet can actually yield a substantial return, both to the individuals and to their communities.
Other peculiarities, such as sensory issues, can be accommodated with little more than a willingness to allow small deviations from established policies, rules, or norms. It certainly costs far less to provide an individual having sensitivities to certain sounds or visual stimuli with an environment that reduces exposure to such than it does to offer access for those with visual or mobility impairments, yet the latter have become accepted and commonplace in our society. In my own case, I have always had selective eating issues as well as clothing sensitivities. The first requires little more than awareness of its causes and acceptance of my only eating certain foods (mainly those typically found in a “children’s menu”). People should not be offended that I do not tolerate many foods that might be served with the intention of pleasing me and, in the case of ethnic cuisine, that this in no way implies any prejudice against that culture on my part or, for that matter, criticism of the server’s cooking. The second of my issues requires no more than minor relaxations in dress codes (if that), along with an understanding that I may not always conform to certain clothing styles. Once again, nothing more is needed here than awareness and tolerance of minor differences among individuals.
Issues of communications and social cognition are probably more challenging because they require greater appreciation, on the part of communities and society, of the challenges faced by those living on the autism spectrum. If an autistic person says or implies something deemed as inappropriate or is unaware of something in their social environment that they are expected to recognize, there needs to be complete understanding that this is in no way intentional, let alone done with any malicious intent. Yet again, all that is needed here is greater awareness on the part of the public and tolerance for differences that are relatively minor.
Divisions Within the Autism Community
One of the greatest and most unfortunate barriers to neurodiversity, in my opinion, is the number and degree of divisions and disagreements that exist within the autism community itself. Among autistics, these are so many and so great that it does not pay to even try to enumerate them. This should not be a surprise, given that autistics are known for having strong individual preferences. These differences involve (among others) issues of treatments, practices, organizations, and many concern neurodiversity itself. This lack of unity can greatly undermine the progress that is desperately needed in moving towards greater acceptance and accommodation of autistics in our communities and throughout society.
Differences are also common among various organizations, all of which exist to serve the interests of the same autistic community. Even when there are legitimate disagreements over specific issues, there must still be greater unity if the needs of autistics are to be met. Also, coming as I do from a scientific background, I strongly believe that everyone in the autism community should support legitimate evidence-based science, as it offers the best hope that we have for attaining real and beneficial results. Ideas and treatments that have been repeatedly discredited need to be discarded by the community rather than defended.
The most significant, and perhaps most tragic, of these divisions, however, is the often hostile one between those concerned for the interests of severely impaired autistics and the community of less-impaired autistics (to which I belong). I find this especially disturbing because, even though there clearly are significant differences between the two groups, their needs are different enough that there should be little if any competition for resources among them. The more-impaired clearly need, by far, the greater share of benefits and services, and certainly should receive them. The less-impaired, however, often need little more than recognition, understanding, and acknowledgment of their condition; accommodations that require nothing more than small modifications of established policies; and services that can readily be provided by existing infrastructures such as school counselors, special-education teachers, and psychologists. In particular, early interventions have been shown to yield the greatest positive results, often reducing and even eliminating future need for benefits or services.
On a personal note, some individuals such as myself managed to “beat the odds” and achieve success in school, in employment, and in life. With some notable exceptions, most of these autistics are generally less impaired, and often succeeded despite not having been diagnosed until much later, let alone received any benefits, services, or special considerations. Many autistics of comparable (and even greater) talent were not so fortunate and had considerable difficulties in school and especially with employment for reasons that are all too well known by all of us, and their needs need to be addressed. The main reason that I identify so strongly with the autism community is that, even with my successes and lack of severe impairments, my eventual diagnosis came about as a result of having so many of the less-severe traits and difficulties associated with autism (sometimes nearly every one appearing on a list of these). Because of my experiences, I believe that there is much that unites the broader autism spectrum and no need for such great division in our community.
If the autism community is to attain the goals of neurodiversity, we will need to be as united as possible regarding the common objectives that we all want to achieve.
Karl may be contacted at firstname.lastname@example.org.