Messy Misleading Functioning Labels

A common erroneous assumption is that a person who appears to be functioning well doesn’t need or deserve any support because they seem to be managing “just fine.” A person like this used to be referred to as having “high-functioning autism.” But autistic advocates prefer the more accurately descriptive term “low support needs” because the words “high-functioning” are so misleading. How well an autistic individual functions can fluctuate based upon the level of stress or cognitive demands they are under, whether they are getting enough sleep or proper nutrition, and even if they are feeling poorly due to cold, flu, or any other illness.

An individual who experiences more challenges with daily living skills ought to be referred to as having “high support needs” as opposed to being referred to as “low-functioning” because not only are the words “low-functioning” derogatory and insulting, but they are also very misleading. Most unenlightened neurotypicals (non-autistic people) assume that the ability to talk is the determining factor, as though the ability to speak is some measure of intelligence. But this is simply not so. There are many highly intelligent, very talented and accomplished autistic authors who have written several books (that have been infinitely helpful to promoting autistic advocacy) who happen to rely on assistive augmented communication devices in order to talk. AAC, or assistive augmented communication is a device like what Stephen Hawking used. As one autistic self-advocate Laura Tisoncik so aptly put it, “The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low-functioning means that your assets are ignored.” It is time we retire these unhelpful terms and focus on supporting each individual according to their specific needs.

What neurotypicals observing an autistic person mean by the words “high-functioning autism” is that they are not inconvenienced by the autistic person’s behavior. They assume that if this autistic person is not causing any problems for them, then the autistic person is coping just fine. However, the person may, in fact, not be coping well at all: Often when autistic individuals are over stressed by a situation or circumstances they will go mute and their nervous system shuts down (goes into a dorsal vagal state). To the outside observer, this may appear that the person is unperturbed, calm, or even indifferent. Outside observers will then conclude that if the autistic person had an objection to what was going on then they would surely voice it, (because, after all, that is what a neurotypical person would do), so they take the lack of objection as compliance.

Imagine not being able to express yourself to be able to say “No! Please stop,” or “You are hurting me,” or “You are violating my rights/physical/psychological boundaries.” Now imagine what you would be feeling if your perpetrator persisted, despite you not wanting them to? You would feel helpless to stop the abuse (because violating another person’s civil rights or physical or psychological boundaries is abuse), your anxiety would increase, rendering you even more shut down and mute. Then you would feel angry with yourself for not speaking up for yourself to put a stop to the abuse. You would feel overwhelmed with humiliation and self-blame for not having done right by yourself. Such feelings make a person vulnerable to suicide. The suicide rates among autistics is three to six times higher (it varies by gender) than that in the general population. This statistic affirms that things are not “just fine.”

Now imagine you are an older autistic adult who has experienced a lifetime of similar situations where you failed to advocate for your best interests, safety or well-being because your neurology predisposes you to this self-defeating vulnerability. Many autistic adults are traumatized by such experiences, so that when a new one happens, no matter how innocuous it may appear to outside observers, they are flooded with intrusive memories and the accompanying visceral feelings of all the other times they have been similarly violated in their lives. Older autistic adults are particularly susceptible to this because they have lived through the periods in our history when humiliating corporal punishment was accepted common parenting and educational practice. Back then, no one understood anything about autism, so it was assumed that the individual was willfully misbehaving, and the solution was to beat them into submission. Or to humiliate them with a barrage of demoralizing verbal abuse about their short-comings. (For example, being derided by a teacher in front of the whole class). Experts are now saying that verbal/emotional abuse is far more damaging to the psyche than physical abuse. Gas-lighting is one such form of this kind of verbal/emotional/psychological abuse that many older autistic adults have been subjected to throughout their childhoods because they were told that they had “asked for it” or that “it is for their own good” when they received corporal punishment.

When a person is raised in an environment where it seems that everyone is allowed to violate your personal and psychological boundaries and inflict physical and emotional pain on you, it is very difficult to even realize that you have the right to advocate for yourself when you are being mistreated. This is true for all trauma survivors, not just autistic ones, and it is why they are the favorite targets of bullies…because they have been conditioned to accept abuse and not stick up for themselves or to seek help. The book “But You Said?!” A Story Of Confusion Caused By Growing Up As An Undiagnosed Autistic Person by Emma Wishart does an excellent job of illuminating all the various forms of abuse autistic individuals receive, the confusion this causes, and the resultant cost this imposes upon one’s mental and financial well-being.

Autistic trauma survivors have an additional level of vulnerability when they are being mistreated or threatened with danger because they may also experience alexithymia or depersonalization, which to an unenlightened outside observer makes them appear unaffected by the situation. Because non-autistic and non-traumatized individuals would respond with some kind of emotional reaction to an upsetting situation they automatically assume that a lack of such reaction means that the person is unaffected. But this is a dangerous and erroneous assumption: Alexithymia, the inability to understand or process one’s feelings in “real time,” means that the person is not able to show the expected emotional reaction. This explains the delayed emotional response or delayed grieving that teachers and parents observe when they are perplexed by how their autistic child/student seemed to not even notice the death of a beloved grandparent or pet, but then months later some seemingly innocuous reminder sends the child into waves of grief and despair. Depersonalization is the nervous system’s natural response to overwhelming threat of danger by creating a mental barrier between you and the danger. Almost half of adults in the US will have at least one depersonalization episode in their lifetimes. However autistic and traumatized people experience it more frequently. A person experiencing depersonalization may not be able to mobilize in order to get themselves out of danger, much like a deer in headlights. So instead of running away from a potential mugging their feet remain frozen in place and they are at the mercy of their attacker.

Recently, I experienced a situation in an autistic social support group where a younger autistic individual who was challenged in emotional regulation was allowed to rage in frustration for 45 minutes at another older autistic individual who appeared to have lower support needs. The neurotypical staff assumed that the older person was unaffected by this verbal abuse (and the accompanying lack of intervention from the management staff) because the older person did not show any outward signs of distress in real time. However, this situation caused her a great deal of distress in the following week, re-triggering a lifetime of intrusive traumatic memories of abuse and neglect. The neurotypical support staff also were doing a tremendous disservice to the younger autistic individual by neglecting the opportunity to teach her emotional regulation techniques, which are a very important social skill. By just allowing her to indulge her anger upon others, and thus damage her relationships, they were failing in their mission as a social support group. Instead of providing a safe space for all the participants to acquire and practice important adaptive social skills, they were reinforcing maladaptive behaviors for not just the individual who was challenged in emotional regulation, but in all of the participants, because by making this not a safe space for everyone, it was not a safe space for anyone. Thus all participants were deprived of a learning opportunity of how to take risks and how to advocate for themselves and others. Any program that provides services and activities for autistic people ought to have a staff member who understands about the unique vulnerabilities and support needs of all autistic individuals, and they ought to be able to fairly and justly balance meeting the needs of all individuals, regardless of high or low support needs. Ideally, this staff person should be autistic. The Autistic Self-Advocacy Network’s motto “nothing about us without us” is erudite advice because the ones who know best how to meet the needs of autistic individuals are the autistic individuals themselves.

Michelle M. Baughman is a late-in-life diagnosed adult on the autism spectrum, an educator, a parent of a twice-exceptional child, and a trauma-informed AANE Certified AsperCoach who provides intensive, highly individualized coaching to individuals with Asperger Syndrome (AS) and related conditions. Michelle ascribes to the Neurodiversity paradigm and writes to help debunk the general misconceptions surrounding this condition to help autistics live their best lives and to change the negative cultural narrative about autism.

She may be contacted via email: [email protected], cell phone: (860) 207-4263, or her online presence: http://linkedin.com/in/michelle-m-baughman-28b5a92b

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