Undiagnosed adults with High functioning autism (Hfa) may deliberately cheat with answers in the questionnaires used in the diagnosis of Hfa. People with AS / High functioning autism can give false answers in order to protect their own self-understanding states leading autism experts, including psychologist Dr. Tony Attwood.
If the psychologist or doctor in charge of the review, has a lack of real experience and insight into autism spectrum disorders, the adult with High functioning autism flies under the radar and avoids a proper diagnosis.
Great harm in these situations is done, not only to the person themselves, by cutting them off from any support they need; but primarily to the neurotypical (NT) spouse and children.
These spouses and children are overlooked and ignored by society and authorities. Their lives are isolated when they live with an adult who has the incurable and pervasive developmental disorder of Hfa; becoming traumatized over time by High functioning autism’s tantrums, lack of impulse control, weak – sometimes negative – parenting, mental or physical abuse, and limited ability to take responsibility, show reciprocity and mature adult responses.
Missing diagnosis harms NT spouses and children
The majority of adults with Hfa are still undiagnosed. But that does not mean they do not exist. According to the National Social Board in Denmark about 1 percent of the population has this complex developmental disability that typically involves a lack of self-awareness of their disorder, including lack of understanding of how the condition impacts on their relatives (lack of Theory of Mind). It is the exception that an adult with Hfa will take the initiative to investigate and get a formal diagnosis.
Earlier, it was mistakenly thought that people with autism do not marry and raise a family. Today it is well known that adults of normal intelligence with Hfa very often live in intimate relationships and have children. ASD is genetic, yet we still see many instances where a child has been determined to have High functioning autism or another autism diagnosis, but where the authorities fail to investigate the parent who seems perhaps to have ASD. This oversight negatively affects the neuro-typical spouse who often sees no other choice than to divorce and retreat from the dysfunctional marriage.
It is usually the NT spouse who takes the initiative to get their partner diagnosed. Aspergerpartner.com receives reports from NT spouses, describing almost identical scenarios:
Only after many years of lonely struggle to cope with life, with kids, jobs, homes and a partner with obvious signs of pervasive developmental disorder (ASD/Hfa), they manage to persuade their partner to consult a doctor or psychologist. They manage, unfortunately, only when the partner who is supposed to have ASD/HfA has fallen into severe depression; or when the NT-spouse is starting to talk about divorce.
The couple appear before the clinician who starts with testing the person suspected of having High functioning autism using a questionnaire. Surprisingly, the responses to a series of questions designed to uncover the person’s real social and empathic skills, etc. result in a very different picture from the reality of the negative home situation. The problem is that the answers are false. The answers have nothing to do with reality. The adult with ASD/High functioning autism answers with what he intellectually believes to be the “right” answer, what he imagines or what he believes the clinician wants to hear. The person with HfA wants to give a good impression to the clinician and uses his ability for imitation and role play in the consulting room so as to appear competent. He does not see the connection between the need for honesty in order to help or possibly begin to mend their broken relationship.
A competent and experienced clinician with expertise in ASD cannot be misled. He/she knows that an undiagnosed adult with Hfa has learned from childhood, strategies to compensate for the problems of Hfa which make their lives difficult.
Tony Attwood describes four such compensation strategies:
- escape into a fantasy world
- denial and arrogance
- role play and imitation
But if the couple consults a specialist without the requisite specialized knowledge of ASD to see through the charade, the marital situation is now worse than ever. The neuro-typical spouse is paralyzed by despair when she hears the incompetent clinician wish them all the best; unable to find a particular problem! Except perhaps what to the inexperienced clinician appears to be the neuro-typical spouse’s excessive concern, which – according to the clinician – would be alleviated if the NT-spouse would take even more responsibility for the Hfa spouse’s reactions and emotions…
The Belgian autism expert, PhD. Peter Vermeulen, confirms that tests using only the questionnaires do not reveal the truth of the disability, the real behaviours a person with AS/Hfa exhibits behind four walls. In his book, “Autism as Context Blindness” he explains the problem:
Individuals with AS/Hfa may do relatively well in theory, on structured testing that takes place in an artificial environment outside the context of actual life experiences and situations; but when these same situations occur in real-life contexts with real people and real ethical, social and interpersonal situations, they score poorly.
“It is possible that the adult or adolescent will deliberately mislead the clinician for reasons of maintaining self-esteem or to avoid a diagnosis that may be perceived as a mental illness.” (page 48)
He therefore recommends clinicians to involve the neuro-typical partner’s knowledge and understanding of the situation:
“I have found that it can be an advantage to have the person’s questionnaire responses validated by a family member such as the persons’s mother or partner.” (page 48)
A successful example of positive cooperation between the explanatory doctor and NT partner is described at  by Susanne. Susanne tells how her AS-husband gave misleading test responses and how these responses were carefully adjusted in interaction between the doctor, herself and her husband, so that the correct picture of the husband’s diagnosis appeared.
When persons with Hfa fakes it and deny
Tony Attwood writes in-depth about the challenge of diagnosing persons with Asperger’s syndrome (Hfa), see The complete guide to Asperger’s Syndrome:
“The person may be able to ‘fake it’ in terms of denying difficulties with social competence, and using intellect in the artificial circumstances of a clinic room to provide the response of a typical adult, but may in fact have conspicuous difficulties in everyday social interaction.” (page 52)
“Some girls and women with Asperger’s syndrome, and adults of considerable intellectual ability, can be more difficult to diagnose due to an ability to camouflage their difficulties.” (page 40).
Swedish experts’ criticism
Swedish experts have also criticized the lax use of questionnaires in the diagnosis of autism spectrum disorders. The Swedish autism experts, psychiatrist Lena Nylander and physician Gunilla Thernlund, writing in the professional journal Läkartidningen:
“The number of people who have received an autism spectrum diagnosis has increased significantly among both children and adults. The increase is predominantly among normal intelligence people. The increase in referrals for diagnostic purposes has led to long queues. Administrators have therefore largely outsourced responsibility for the diagnosis, sometimes to solo psychologists who often have inadequate knowledge and experience. To the extent that doctors are involved, they are usually also inexperienced. The diagnosis tool is to increasingly use different questionnaires. Sometimes the diagnosis is made without adequate description of the childhood story, and often lacking a differential diagnostic reasoning.”
See full article at Läkartidningen 16-17, 2014
In Denmark the Autism Society acknowledges the problem of undiagnosed adults with autism disorders hence the association offers courses for psychologists and psychiatrists solely in diagnosing adults.
Can NT-spouses benefit from using AS-tests from the net?
Yes. This article is not intended to discourage NT-spouses from seeking help by using questionaires from the internet. You just need to be aware that such tests are an indicator, not a definitive diagnostic tool.
The vast majority of all adults with Asperger’s autism and high functioning Autism are still not formally diagnosed. When their NT spouses become aware that something is wrong, that it seems like autism; then it is quite natural to use serious tests available on the internet. Just be aware that such tests are merely indicators and not a true diagnostic tool. A whole of life picture is required from many sources.