Misperceptions About Diagnosis of ASD in Adulthood

Some people believe that individuals identified as having an Autism Spectrum Condition in adulthood have less impairment and better overall functioning across the board. But on what scale is this supposed better overall functioning of late-diagnosed adults being measured upon?

Such biased beliefs do not apply to all individuals identified in adulthood. This is a perfect example of the type of myth that serves to disadvantage late-diagnosed adults, as well as undermine healthy views toward this population. 

Some autistic adults may have been previously misdiagnosed with conditions such as ADD, intellectual disability, OCD, a personality disorder, schizophrenia, et cetera. This is especially true for adults born before autism was included in the Diagnostic and Statistical Manual of Mental Disorders (though autism is contained and defined in the DSM, autism is a neurological condition that is classified as a developmental disability. It is NOT a mental disorder).

Asperger’s did not make it into the DSM until 1994. That explains a notable percentage of adults recently identified as Asperger's autistic who are included in current autism statistics. 

Should we assume that individuals who meet the requirements of an ASD diagnosis in adulthood (of which a mentionable percentage may have been hospitalized or suicidal at one point in their lives) have little to no support needs due to their acquired ability to often pass as what is perceived to be normal? Does learning how to cope with, cover up, or even hide a disability mean than a person is not really disabled, or that such a person has grown out of a disability? I strongly disagree.

How do such assumptions positively foster understanding of late-diagnosed autistic adults, or adults who gather the courage to question or seek an ASD assessment?

Autistic adults--in addition to those who are deeply familiar and personal with autistic adults--have related that in many cases, the “functioning” or “impairment” of an autistic adult may actually be similar to what may be seen in autistic children, yet the autistic adult’s ability to compensate for it, or hide it, may be anywhere from mild to moderate to extreme in sophistication.

Some individuals who are diagnosed as having ASD in adulthood may have light support needs. Others may have moderate or heavy support needs. These needs can and often do vary over the course of a lifetime (ex: light needs one season or year, and moderate or heavy needs the next). Day to day variability across the lifespan, and task-based variability, are important points that are in no way tied to what age a person is when diagnosed with an ASD.

Most, if not all, individuals on the autistic spectrum have uneven skills and strengths. An example of this would be an autistic person who is a computer whiz, yet challenged or completely incapable when it comes to attending to self-care needs, checking the mail, grocery shopping, housekeeping, or preparing a sandwich. It is exceedingly important not to box and rigidly classify individuals on the spectrum by using only functioning levels, which are subject to incongruence and variability.

Myths about autism and late-diagnosed adults too often lead clinicians, community members, families, parents, and service providers, to believe or say unfortunate things to late-diagnosed adults on the spectrum. Some examples:

• “The fact that you can walk into my office and ask for a diagnosis means that you cannot possibly have an ASD,” 
  
• “I don’t agree that you have an ASD. You seem to have a great sense of self-awareness, plus you are quite articulate,” 
  
• “You get overstimulated in daily life? So does everybody,” 
  
• “You think your employment issues are related to autism? You’re just lazy,” 
  
• “Your level of intelligence makes it hard for me to believe that you could possibly have any support needs,”
  
• “You have friends plus a significant other? No. Autistic people are incapable of that,” 
  
• “You don’t look or seem autistic. My cousin and my best friend’s children are autistic and you are nothing like them,”
  
• “Your ASD is very slight, if that. The fact that you have received a diagnosis in adulthood means that you are obviously capable in daily life.”

I am profoundly deaf. Besides being fluent in American Sign Language, I successfully use a cochlear implant in addition to a hearing aid. I also speech-read (lipread). My cochlear implant has significantly increased my speech intelligibility. Acquaintances and strangers may not ever suspect that I have a profound hearing loss. Matter of fact, if someone were to ask an acquaintance or stranger if they think I am deaf, they may likely respond with something like, “No. Elesia could not possibly be deaf. She hears and speaks to me just fine.” And they would be absolutely certain.

But in reality, I am deaf, meaning that without the use of ASL my ability to easily communicate with those who do not know ASL takes a drastic turn (most notably in situations where there are either a lot of speakers or significant background noise). Without my CI and hearing aid, my world is nearly silent--which I happen to like. I do not try to pass as a hearing person, but I cope with my deafness in a hearing world, and I have learned how to advocate for my needs. Does my ability to set up ideal communication or hearing environments whenever possible make me any less deaf? Not according to an audiological instrument that measures hearing loss.

My deafness is a HUGE issue when it is not accommodated, yet it can easily be undermined or go undetected when I have appropriate useful assistive devices, communication, and support in place. Without such supports, the change in my functioning level (outside of my comfort zones) is immediate and radical. Take away my ability to advocate and set up ideal environments and there would be absolutely no room for aloofness or denial in regards to the significance of my deafness. The same goes for my diagnosis on the autistic spectrum.

I am self aware enough to know how to set my world up so that I can function best. I know what to avoid, and I constantly strive and struggle to know what routines, support, and whatever have you that I need to be my most successful in life. I am a highly self-determined individual. But again, without the supports I have in place, my whole world would come crashing down and the person that I am with intact aid would become significantly less functional. The last thing I would need at that point is for someone to deny me assistance based on misleading assumptions, perceptions, and myths.

I cannot quite put words to express how adverse, damaging, demoralizing, and depressing it is for autistic adults who have gathered enough skills to fit in—in this often unforgiving world—to not always be able to count on being taken seriously by the very people who are appointed to help them.

My appeals and sentiments above are the strong feelings and words I simply must express when I run across seemingly innocent beliefs such as: most individuals identified as having an ASD in adulthood have less impairment and better overall functioning.

And so I recommend something more appropriate and useful as a replacement, such as: autism may present differently in adults than it does in children.

World Autism Interviews: Alex Cheezem/Applied Behavior Analysis

Alex Cheezem is autistic. He recently completed Nova Southeastern University's program in Applied Behavior Analysis and is presently engaging in supervised fieldwork, with approximately 250 hours remaining before he can sit the BCaBA exam. Alex's hobbies include reading Cochrane Reviews, trolling epidemiology journals for experimental methodology articles, and following autism research.

Elesia: Please share a summary of your background, experience, knowledge, and training in relation to ABA.

Alex: I suppose my background and experience start when in my adolescence. While I was running the metaphorical gauntlet of misdiagnoses that many of us on the spectrum seem to experience, one of the "treatments" I was subjected to -- based on a complete misunderstanding of what was going on with me -- was a particularly incompetent form of ABA-based "therapy".

I have to clarify on this that I don't just mean that the people in question were abusive. They were using abuse as a substitute for skill and understanding, and their lack of those was pretty extreme.

 

That experience left me rather thoroughly traumatized, but I eventually got a sense of closure and moved on.

 

I studied ABA as part of my undergraduate psychology courses, and entered the postgraduate BCBA/BCaBA certification program at Nova Southeastern University in August of 2008. I completed the full BCBA coursework as of August of 2009. At present, I'm about 250 hours of supervised independent fieldwork away from taking the BCaBA exam -- the BCBA exam will have to wait until I get a Master's.

 

I've completed two semesters of practicum in ABA at the Mailman Segal Institute for Early Childhood Studies. Most of that time was spent working with the Baudhuin Preschool, which specializes in autistic children. I'm presently working on setting up supervised fieldwork, but running into a variety of delays.

 

Elesia: Is the ABA approach for children who are on the spectrum regulated by a professional organization?

 

Alex: That's a misleading question -- there isn't a singular ABA approach for anything, much less for autistic children. That said, such approaches are supposed to be. I phrase it like that because the Behavior Analyst Certification Board really only has control over people who certify as behavior analysts, and not everyone who practices based on ABA does for a variety of reasons.

 

This can be benign -- for instance, psychologists often incorporate behavioral techniques into their practice; in that case, their practice simply falls under different authorities (and, frankly, stricter ethical codes). It can also be quite problematic.

 

The full situation is phenomenally complex, and doesn't lend itself to a brief answer.

 

Elesia: What do you feel are the positive aspects and benefits of using an ABA approach with children who are on the autistic spectrum?

 

Alex: I think I'll need to take a step back and address what ABA and ABA-based approaches are. Modern ABA really started as a reaction to psychoanalytic theory, and its roots really show in a lot of places.

 

In essence, B.F. Skinner decided that the explanations based on inner processes and subconscious hypotheticals were responsible for a lot of the problems with psychoanalysis, and decided to go in the opposite direction. Contrary to a number of people's beliefs, he didn't say that those processes don't exist, but rather that they couldn't be directly observed and thus would be difficult -- if not impossible -- to study.

 

Anyway, several of the advantages of behavioral approaches to dealing with issues come from the fact that ABA basically ignores the mind and inner experiences and instead focuses on observable, measurable behavior.

 

How a behavior analyst practices -- or is supposed to practice, anyway -- is by measuring and observing patterns in behavior. Based on these patterns, they then make changes in that environment (including the behavior of the people in it) in order to exert prospective control over some aspect of people's actions.

 

There are obvious potential issues here, but discussing them doesn't really lead to an explanation of the advantages to ABA-based approaches.

 

Despite the best efforts of some truly gifted researchers, we still really haven't come to a practical understanding of autistic learning processes and how they differ from neurotypical learning. Since we don't have that understanding, the best we can really do in clinical practice is to acknowledge this.

 

What I'm trying to get at here is that ABA-based approaches don't require knowledge and understanding that we don't have. I'm sure that we'll develop better methods in time, but we certainly aren't there yet.

 

ABA-based methods are also extremely flexible. The same basic approach can be applied to getting a child to stop tantrumming at mealtime and to get him to learn arithmetic.

 

Finally, I suppose I should mention that the empirical support for ABA-based methods is generally better than that for any other type of autism approach available... although that is admittedly not saying much.

 

Elesia: Explain the potential dangers, drawbacks, or negatives related to ABA-based therapies for autistic children.

 

Alex: There isn't exactly a shortage of them.

 

When you practice based on ABA, you are attempting to manipulate or control what someone else does… and there's a huge number of problems with this, mostly centered around the issue of someone deciding what is acceptable behavior for someone else.

 

Understanding behavior analysis does not mean understanding autism. Many behavior analysts basically think of autism as nearly interchangeable with mental retardation, certain issues in Angelman's Syndrome, and so on, mentally lumping all of the conditions together as "developmental disabilities". This is not accurate... and the confusion can lead to a number of problems.

 

Then, of course, there are the people who make inflated claims about just what practice based on ABA can or can't do, those who don't practice based on the evidence, and those who don't seek adequate training and/or understanding. Frauds and incompetents exist in just about any profession, but I think the ABA-based ones are particularly vile.

 

There's the dangers involving focusing on what a person does rather than on the person themselves. The technical language of behavior analysis doesn't help with this.

 

There's also the various research issues, like lack of placebo control, lack of blinding, lack of randomization in trials, lack of control for expectancy effects... I could go on and on here, but I tend to laugh inwardly when ABA-based methods are described as "scientifically proven". Beyond the more general fact that science doesn't prove anything (it works by providing evidence, and specifically by providing evidence against ideas, not for them), very few of the studies I've seen are even capable of providing a level of evidence that would be acceptable in, say, Circulation Research.

 

Of course, they provide a level of evidence that's much higher than most of the education research I've seen, so take that as you will.

  

Elesia: What do you feel is most misunderstood about ABA in general?

 

Alex: Everything -- the list starts with just what ABA is and continues straight on from there. It often makes it nearly impossible to get legitimate criticism of ABA and ABA-based practice from people other than behavior analysts... even if the people writing the criticism have legitimate points.

 

For instance, I ran across a detailed criticism of "ABA" a few months ago that would have been almost entirely correct... if you'd substituted the phrase "Lovaas-type DTT" for every usage of the term "ABA". Suffice it to say that Lovaas-type DTT and ABA are most certainly not the same thing, even if Lovaas-type DTT does have ABA as its theoretical basis.

Parents in the Autism World

Do Autistic self advocates view parents of autistic individuals as enemies? Do they perceive parents who support organizations such as Autism Speaks as opponents? 

It should not be forgotten that a portion of Autistic self advocates are parents of autistic children themselves.  

Enemy is a strong word to use toward parents who are most often at the hands/mercy of educational and medical service providers. Information about autism that parents may receive from these service providers often does not focus on self advocacy and equal rights for autistic children. Instead, provided information tends to focus on only medical views of the autistic condition, in addition to services and treatments provided for autistic children. While some of the information contained in the references may be helpful and worthwhile, there is often nothing educating parents on the existence of the adult Autistic community and its literature and organizations. Parents are given little to nothing in regards to the concepts of autistic self advocacy, disability rights, and the social model of autism.

A parent's main concern is going to be to help their child by utilizing whatever means are available. Good Parenting 101 = Help Your Child No Matter What. Parents will naturally lean toward autism-focused groups and/or organizations offering help and support. Inspecting the inner-workings of such groups and organizations may be the last thing on a parent's mind when they are knee-deep in making sense of the new course or path their life has taken. 

People who have never been exposed to disability on a wide scale cannot even begin to fathom why an autism-focused organization--such as Autism Speaks--may not necessarily be all that it claims to be. After all, why on earth would organizations that are claiming to help the disabled have nothing but only the best of intentions?

Self advocacy and empowerment of the disabled is a giant step in thinking when coming from a place of needing healing, help, and support, especially when the support services offered have come from a one-sided medical perspective.

Some parents of autistic children are extremely proactive, sensitive, and thoughtful. Some parents latch on to the first thing they see/try and cling like a vine. Some parents reach out and contact other parents of children on the spectrum and ask what those parents are doing. Some parents go home, Google autism, and BOOM: Autism Speaks and Autism Research Institute appear. 

It is of significant importance to remember that heart-broken well-meaning parents are going to be quite confused when they see Autistic adults protesting an organization that has essentially served as a resource to parents of autistic children. Many parents who feel they have done a decent job navigating the world of autism are going to be shocked when they see a protest sign with a message reading: Autism Speaks Does Not Speak for Us! Or: Nothing About Us Without Us!

Autistic Self Advocacy Network (ASAN), The Autism Acceptance Project (TAAProject), and TASH are organizations that are just as valid for parents to know about and utilize as resources. Are we fully preparing autistic children for life if we ignore the voices of autistic adults? What message does that send to ignore autistic adults and exclude them from important decision-making processes?

Thanks to the intolerant structure of our society, many people need to be taught to release fear, pity, and myth in order to accept what is different. It is a shame that we seem to be born with acceptance and tolerance intact, however, some of us are poisoned by the social climate we inhabit (ex: media throwing around the word retard as if there is no consequence, therefore feeding and perpetuating damaging conscious and subconscious stereotypes).

Many upright well-intentioned people do not know how to accept autism because it is not being taught on a wide enough scale. People have to want to accept autism, and only then can they Google it and make informed decisions regarding the sources presented. 

There is a great void to be filled. As far as the Autistic community is concerned, we have a lot in common with parents, only it needs to be explained that the *means* of cure is not effective toward our common ends. I would like to see the growth of auxiliaries to autistic self advocacy organizations and groups so that parents may get involved in a pro-self advocacy spirit. 

Parents of autistic children are not the antagonists of the Autistic community. They are potentially our greatest support.