Disclosing Your Autism Diagnosis: Important Considerations
Learning you have Autism Spectrum Disorder is one matter. What to do with that information is another. Should you tell people or keep it to
Learning you have Autism Spectrum Disorder is one matter. What to do with that information is another. Should you tell people or keep it to
Hiding one’s self in social situations is a common coping strategy for women with Autism. It is a way of trying to fit in with
It is a little-known fact about adults on the Autism spectrum, including those with Asperger’s syndrome, that problem-solving and behavioral regulation are often more significant
Dr. A is a pediatric oncologist and chief medical officer at his local hospital. Patient reviews uniformly describe him as kind, attentive, and caring. He
Because of their difficulty recognizing what other people are thinking and feeling, adults with Autism Spectrum Disorder typically understand the literal, rather than the figurative,
Dr. Kenneth Roberson is an Adult Autism Psychologist in San Francisco with over 30 years of experience. Click below to ask a question or schedule an appointment.
Do you have Asperger’s Syndrome (Autism Spectrum Disorder) or know someone who does? Are you looking for a reference guide about Autism Spectrum Disorder in adults? Do you have questions you’d like to ask an expert in adult Autism? If your answer is Yes to any of these questions, this book is for you.
Perhaps you are a spouse wondering if your partner has Asperger’s, a friend, acquaintance or colleague of someone you suspect has it, or perhaps you wonder if you might have it yourself. How would you know?
In this chapter, I will explain how the process of diagnosing someone for Asperger’s is usually carried out, both in general terms and the specific way I undertake a diagnosis. I will describe the types of information that is sought in an assessment for Asperger’s and how that information is collected. I will answer the question of how accurate a diagnosis is, the confidence one can have in a diagnosis of Asperger’s and I will discuss the advantages and disadvantages of having a diagnosis.
Diagnosing Asperger’s is a fairly easy process in principle. But in practice it is complicated and necessities a professional who understands thoroughly not just the characteristics of Asperger’s but how they are played out in real life. Reading about Asperger’s in a book or articles generally makes it seem that Asperger’s is a clear cut, well defined and easily identifiable condition. In truth, people with Asperger’s behave in many different ways and not always exactly how it is defined.
For example, someone with Asperger’s can be quite intelligent and have mastery over numerous facts, yet have much less comprehension emotions and how they are expressed. The person may be able to identify basic emotions, such as intense anger, sadness or happiness yet lack an understanding of more subtle expressions of emotions such as confusion, jealousy or worry.
How is it possible to tell for sure if someone doesn’t understand subtle emotions? They often don’t come up while sitting in an office speaking to a professional and because the person is not aware of their presence it’s unlikely that person would volunteer how hard it is to understand them. Relying on a spouse’s or friend’s report about how someone recognizes emotions is not always advisable since those reports are filtered through the spouse or friends’ own biases and their own ways of understanding emotions.
The only way to tell is to be around someone long enough to experience what they are like, to see how they respond in situations that test the features of Asperger’s and ask the right kinds of questions to clarify whether they have those features. There is test yet developed that can be used to make a diagnosis of Asperger’s, no instrument that measures Asperger’s nor any procedure that can objectively sort out those with Asperger’s from those without it. Brain scans, blood tests, X-rays and other physical examinations cannot tell whether anyone has Asperger’s.
The bottom line is that Asperger’s is a descriptive diagnosis. A person is diagnosed based on the signs and symptoms he or she has rather than the results of a specific laboratory or other type of test. Those signs and symptoms are often subtle and it takes someone with considerable experience to tell whether they are present and, if so, whether there is enough of a case to say confidently that the person has Asperger’s. It is all a matter of confidence, that is, with very few exceptions no one can say that someone else has Asperger’s only that one has a certain degree of certainty that a person does have Asperger’s.
With this in mind, what is the actual process of finding out whether someone has Asperger’s?
Other professionals may take different steps but I have a clear-cut procedure that I go through when asked to assess Asperger’s. I first determine whether it makes reasonable sense to undertake an assessment of Asperger’s. The assessment process itself is time consuming and it can be costly. Why go through with it if there is no good reason to assume there might be some likelihood of finding the behaviors and signs of Asperger’s? After all, you wouldn’t go to the trouble of evaluating whether you have a broken foot if, in the first place, there is absolutely nothing wrong with your foot.
Currently there are nine screening questionnaires that are used to identify adults who may have Asperger’s. Most require the respondent to indicate whether he or she agrees with a statement related to Asperger’s.
Examples of actual statements are:
Completing one or more of these questionnaires can identify abilities, inclinations and behavior that could be indicative of Asperger’s syndrome. The results might suggest that it makes sense to investigate further if enough criteria are present to indicate a diagnosis of Asperger’s.
The questionnaires and scales for adults are as follows, in alphabetical order:
These questionnaires indicate whether a person has characteristics that match those of people with Asperger’s but that, in and of itself, doesn’t prove someone has or doesn’t have Asperger’s. The person filling out the questionnaire may be responding to the questions with the intention, conscious or not, of demonstrating that they don’t have, or for that matter they do have, Asperger’s. Often people answer these questions based on what they know about Asperger’s, they’ve read or been told about it, or what they imagine it is, and what they are indicating in their answers is not a accurate reflection of the characteristics they actually have.
Again, screening questionnaires are designed to identify potential cases of Asperger’s syndrome but they are not a substitute for a thorough diagnostic assessment.
To do that, an experienced professional needs investigate two things: the person’s medical, developmental, social, family and academic history; and how the person responds to a face-to-face assessment of social reasoning, communication of emotions, language abilities, focused interests, and non-verbal social interaction.
Diagnoses are most valid and accurate when they are based on multiple sources of information. One highly important source are any documents, including reports, evaluations, notices, or assessments, that speak to the person’s social, emotional, language, and physical growth. An example is previous medical reports documenting signs of early language delays and/or peculiarities, coordination problems, behavioral difficulties or unusual physical problems. School reports might indicate past social and emotional difficulties, along with academic tendencies, that could be relevant to any indications of Asperger’s syndrome. Tutoring reports, evaluations of group activities, personal diaries, family recordings and other such records often provide valuable insights about the likelihood of Asperger’s.
It is often the case that a person seeking an evaluation does not have any documentation, formal or informal, that is relevant to the assessment process. That is not an insurmountable problem. We work with what we have, and a diagnosis, either way, doesn’t depend upon any one piece of the assessment process. I have had many cases where I was able to conclude with confidence whether the person had Asperger’s without seeing one single piece of written evidence about that person’s past. It helps when that evidence is available but it is not critical.
Sitting down and talking to someone makes the difference between an assessment of Asperger’s that has a high degree of confidence and one that is questionable. When I assess someone for Asperger’s I ask to meet face-to-face for three meetings.
The first meeting covers general facts about the person, particular those relating to his or her present life. I want to find out about the person’s significant relationships, whether they are friends, work colleagues, spouse or partner, children or anyone else with whom the person interacts regularly. I am interested in how the person gets along at work and his or her work performance, how the person manages daily living, what initiative the person takes in planning and achieving life goals, and how satisfied the person is with his or her life. These questions help me assess whether the person’s attitudes towards life, conduct in relationships, and general success in achieving life goals reveal any of the characteristics that typically are found in people with Asperger’s.
The second meeting focuses on the person’s background, particularly information about the person’s early family life; previous school experiences; past friendships, employment and intimate relationships; childhood emotional development and functioning, and significant interests throughout the person’s life. Because Asperger’s is a condition that exists at or before birth, clues about the presence of Asperger’s are found in the history of the person’s childhood. Hence a thorough understanding of early social, emotional, family, academic and behavioral experiences are essential to the diagnostic process.
The third and final meeting is a time to clarify questions that were not completely answered in the previous meetings, gather additional information and raise additional questions that have emerged from the information collected so far. When everything has been addressed to the extent allowed in this timeframe, the final part of the clinical interview is the presentation of my findings.
Presenting these findings is a multi-step process. First, I explain that certain characteristics are central to Asperger’s syndrome. If those characteristics are not present in the person then he or she doesn’t have Asperger’s and if they are present a diagnosis of Asperger’s is much more viable.
There are also characteristics that are related to Asperger’s but are also shared by other conditions. An example of this is difficulty noticing whether people are bored or not listening in conversations. Lots of people don’t pay much attention to whether people are listening to them, but that doesn’t mean they have Asperger’s. On the other hand, in combination with other signs of Asperger’s, not noticing how people respond in conversations, could be a significant confirmation of an Asperger’s diagnosis.
To diagnosis and adult with Asperger’s requires that the person have:
What happens if someone has some of these difficulties but not all? Do they qualify for a diagnosis of Asperger’s, or not?
The answer lies in how much these characteristics affect the person’s social, occupational or other important areas of functioning. If, for example, the core characteristics of Asperger’s lead a person to speak in few sentences, interact with people only around very narrow, special interests and communicate in odd, nonverbal ways, we can say that these are indicators that a diagnosis of Asperger’s is correct.
If, on the other hand, the person engages in limited back-and-forth communication, attempts to make friends in odd and typically unsuccessful ways, and is not especially interested in reaching out to others, a diagnosis of Asperger’s could be considered but not assured.
A diagnosis is most assured when the signs of Asperger’s are present in the person all the time, they have an obvious effect on the person’s ability to be successful in life, and don’t vary much. Additionally, when the information used to make a diagnosis comes from multiple sources, like family history, an expert’s observations, school, medical and other reports, questionnaires and standardized test instruments the diagnosis is likely to be more accurate and reliable.
The advantages of having an accurate, reliable diagnosis of Asperger’s are many. It can eliminate the worry that a person is severely mentally ill. It can support the idea that the person has genuine difficulties arising from a real, legitimate condition. Other people, once they are aware that the person has Asperger’s are often able to be more accepting and supportive. A new, and more accurate, understanding of the person can lead to appreciation and respect for what the person is coping with.
Knowing someone has Asperger’s opens up avenues to resources for help as well as access to programs to improve social inclusion and emotional management. Acceptance by friends and family members is more likely. An acceptable explanation to other people about the person’s behavior is now available leading to the possibility of reconciliation with people who have had problems with the person’s behavior.
In the workplace and in educational settings, a diagnosis of Asperger’s can provide access to helpful resources and support that might otherwise not have been available. Employers are more likely to understand the ability and needs of an employee should that employee make the diagnosis known. Accommodations can be requested and a rationale can be provided based on a known diagnosis.
Having the diagnosis is a relief for many people. It provides a means of understanding why someone feels and thinks differently than others. It can be exciting to consider how one’s life can change for the better knowing what one is dealing with. There can be a new sense of personal validation and optimism, of not being defective, weird or crazy. With the knowledge that one has Asperger’s, joining a support group, locally or through the Internet can provide a sense of belonging to a distinct and valued culture and enable the person to consult members of the group for advice and support.
Acceptance of the diagnosis can be an important stage in the development of successful adult intimate relationships. It also enables therapists, counselors and other professionals to provide the correct treatment options should the person seek assistance.
Liane Holliday Willey is an educator, author and speaker. She was diagnosis with Asperger’s syndrome in 1999. In her 2001 book, “Asperger’s Syndrome in the Family: Redefining Normal in the Family, she wrote the following self-affirmation pledge for those with Asperger’s syndrome.
– I am not defective. I am different.– I will not sacrifice myself-worth for peer acceptance.– I am a good and interesting person.– I will take pride in myself.– I am capable of getting along with society.– I will ask for help when I need it.– I am a person who is worthy of others’ respect and acceptance.– I will find a career interest that is well suited to my abilities and interests.– I will be patient with those who need time to understand me.– I am never going to give up on myself.– I will accept myself for who I am.(Willey 2001. p. 164)
Are there disadvantages to a diagnosis of Asperger’s? Yes, but the list is shorter than the list of advantages.
Some people receive a diagnosis of Asperger’s with discouragement and disapproval, believing they necessarily will be severely limited in how they can lead their lives. No longer will they be able to hope to have a satisfying, intimate relationship. Instead, their future will be filled with loneliness and alienation from others with no expectation of improvement. This, of course, is an unrealistic and exaggerated depiction of what living with Asperger’s is like.
Of course, it is possible that people in someone’s life will react to the diagnosis of Asperger’s by alienating themselves from that person. Stigmatizing and disapproval, based on the knowledge that a person has Asperger’s is still prevalent in our society. Damage to one’s self-esteem as a result of disapproval, ridicule, discrimination and rejection is possible when knowledge of an Asperger’s diagnosis is disseminated.
Job discrimination is a realistic possibility in the event that an applicant reveals an Asperger’s diagnosis. While it is not legally acceptable to do so, we know that silent discrimination happens, hiring decisions are not always made public and competition can leave someone with a different profile out of the picture.
Similarly, having a diagnosis of Asperger’s may lead others to assume the person will never be able to be as successful in life as neurotypical people. It is commonly assumed that Asperger’s makes someone too difficult to be around, unable to get along with people, too narrowly focused on their own interests, and too stubborn, self-absorbed and lacking in empathy to be a contributing member of society, a view that is narrow in its own right and sadly mistaken in many cases. Nevertheless, attitudes like this can arise when a diagnosis of Asperger’s is made public.
Often, people tell me when we meet to discuss an Asperger’s evaluation that the symptoms of Asperger’s they have seen, usually online, match what they notice in themselves. Just as often other people, in researching Asperger’s symptoms, believe the person coming to see me has those very characteristics and therefore must have Asperger’s.
The problem with this is that several other conditions share many of the same symptoms with Asperger’s. Just knowing how the person behaves, thinks and feels does not, in and of itself, tell you whether he or she has Asperger’s. It very well might be that some other condition is the real problem or, more likely, two or more conditions are overlapping. In this case, it is more accurate to say the person has co-existing conditions rather than it being a straightforward matter of Asperger’s.
Here is a description of the psychiatric conditions most frequently associated with Aspergers’:
People with ADHD typically have difficulty paying attention to what’s going on around them, they are easily distracted, they tend to do things without thinking about the results, they are often forgetful, have trouble finishing what they intended to do, are disorganized, jump from one activity to another, are restless and have poor social skills.
Many of these symptoms overlap with those of Asperger’s. Research has shown growing evidence for a connection between Asperger’s and ADHD. Genetic studies suggest the two disorders share genetic risk factors, and studies of the incidence and distribution of both conditions confirm that many people with Asperger’s have symptoms of ADHD and vice versa. Brain imaging and studies of the brain structure show similarities between the two disorders.
Having said that, there are important differences between the two. People with ADHD often try to do multiple activities at the same time. They get distracted easily and jump from one interest or activity to another. Focusing on one thing for a long time is hard for them. On the other hand, people with Asperger’s tend to focus on only one activity at a time, and they focus on that activity intensely with little regard for anything else going on around them. They are hyper-focused rather than unfocused.
There is a similar difference with respect to impulsivity. People with ADHD will do things without considering the outcome of their actions. They act immediately and have trouble waiting. They interrupt, blurt out comments and seem unable to restrain themselves.
People with Asperger’s think through their actions more carefully. They may interrupt and say things without regard for whatever else is going on but it is because they don’t understand how conversations are carried out rather than not being able to restrain themselves.
There is a big difference in how adults with ADHD use language compared to adults with Asperger’s. They do not tend to have specific weaknesses in their understanding and use of language. They readily understand when a statement such as, “it’s raining cats and dogs” is being used as a figure of speak and not as a literal statement. They also speak with a normal tone of voice and inflection.
In contrast, adults with Asperger’s tend not to understand non-literal language, slang or implied meanings. They may talk a lot and have more one-sided conversations as do adults with ADHD but they do so because lacking an understanding of how the person they are talking to is grasping what they are saying they are, in effect, talking to themselves.
Difficulty interpreting non-verbal communication and subtle aspects of how people relate to each other is characteristic of adults with Asperger’s. They confuse behaviors that may be appropriate in one setting from those that are appropriate in another, so that they often act in appropriate for the situation they are in. They find it hard to interpret the meanings of facial expressions and body posture, and they have particular difficulty understanding how people express their emotions.
Adults with ADHD, on the other hand, understand social situations more accurately and they engage much easier in social situations even though they are easily distracted and often not observant of what’s going on around them. They can consider what other people are thinking much easier than adults with Asperger’s and they participate in the give-and-take of social interactions more readily.
Adults with ADHD tend to express their feelings directly and fairly clearly whereas adults with Asperger’s do not show a wide range of emotions. When they do communicate their feelings they are often out of synch with the situation that generated the feeling.
Adults with ADHD tend to process sensory input in a typical manner. They may have preferences for how they handle sensory input like music, touch, sounds, and visual sensations but generally the way they handle these situations is much like other adults.
In contrast, adults with Asperger’s have more specific preferences about the kind of sensations they like and dislike. They may be overly sensitive to one kind of sensation and avoid that persistently. Or they may prefer a certain type of sensation and, a certain type of music, for example, and seek it over and over. Overall, sounds, temperature differences, visual images and tastes more easily overwhelm adults with Asperger’s than adults with ADHD.
The core features of obsessive-compulsive disorder (OCD) are frequent and persistent thoughts, impulses or images that are experienced as unwelcomed and uninvited. It occurs to the person that these intrusive thoughts are the produce of his or her own mind but they can’t be stopped. Along with these thoughts are repetitive behaviors or mental acts that the person feels driven to perform in order to reduce stress or to prevent something bad from happening.
Some people spend hours washing themselves or cleaning their surroundings in order to reduce their fear that germs, dirt or chemicals will infect them. Others repeat behaviors or say names or phrases over and over hoping to guard against some unknown harm. To reduce the fear of harming oneself or others by, for example, forgetting to lock the door or turn off the gas stove, some people develop checking rituals. Still others silently pray or say phrases to reduce anxiety or prevent a dreaded future event while others will put objects in a certain order or arrange things perfects in order to reduce discomfort.
These behaviors, to repeat the same action over and over, are similar to the repetitive routines associated with Asperger’s. Individuals with both conditions engage in repetitive behaviors and resist the thought of changing them. The difference is that people with Asperger’s do not view these behaviors are unwelcomed. Indeed, they are usually enjoyed. In addition, whereas Asperger’s occurs early in the person’s life, OCD develops later in life. People with OCD have better social skills, empathy and social give and take than those with Asperger’s.
Social Anxiety Disorder
Social Anxiety Disorder, also called social phobia, occurs when a person has a fear of social situations that is excessive and unreasonable. The dominate fear associated with social situations is of being closely watched, judged and criticized by others. The person is afraid that he or she will make mistakes, look bad and be embarrassed or humiliated in front of others. This can reach a point where social situations are avoided completely.
Asperger’s and Social Anxiety Disorder share the common element of discomfort in social situations. Typically, along with this discomfort is lack of eye contact and difficulty communicating effectively.
The difference between these two conditions is that people with Social Anxiety Disorder lack self-confidence and expect rejection if and when they engage with others. Adults with Asperger’s, on the other hand, don’t necessarily lack self-confidence or are afraid of being rejected, they are simply not able to pick up on social cues. They don’t know how to act appropriately in social situations and thus tend to avoid them. In addition, Social Anxiety Disorder may be present in children but more commonly it develops in adolescence and adulthood whereas Asperger’s can be traced back to infancy.
People with Schizoid Personality Disorder (SPD) avoid social relationships and prefer to spend time alone. They have a very restricted range of emotions, especially when communicating with others and appear to lack a desire for intimacy. Their lives seem directionless and they appear to drift along in life. They have few friends, date infrequently if at all, and often have trouble in work settings where involvement with other people is necessary. They are the type of person that is others think of as the typical “loner.”
A noticeable characteristic of someone with SPD is their difficulty expressing anger, even when they are directly provoked. They tend to react passively to difficult circumstances, as if they are directionless and are drifting along in life. They are withdrawn because it makes life easier. They don’t gain a great deal of happiness from getting close to people. Often this gives others the impression that they lack emotion.
While this may strike some as similar to Asperger’s people with SPD can interact with others normally, if they want to, and can get along with people. They don’t have the strong preference for logical patterns in things and people, an inability to read facial expressions or “blindness” to what is going on in other people’s minds that characterizes Asperger’s.
In addition, people with SPD typically do not show these features until late adolescence or adulthood. The characteristics of Asperger’s must be noticeable in infancy or early childhood to receive the diagnosis of Asperger’s.
Most importantly, Asperger’s is a form of autism whereas people with SPD have a “neurotypical” brain and have developed into a personality of extreme introversion and emotional detachment.
Individuals with Antisocial Personality Disorder (APD) disregard and violate the rights of others. They don’t conform to social norms with respect to lawful behavior, such as destroying property, stealing, harassing others, and cheating. They are frequently deceitful and manipulative so as to obtain money, sex, power of some other form of personal profit or pleasure. They tend to be irritable and aggressive and to get into physical fights or commit acts of physical assault (including spousal or child beating).
They are consistently and extremely irresponsible financially, in their employment, and with regard to their own safety and the safety of others. They show little remorse for the consequence of their actions and tend to be indifferent to the hurt they have caused others. Instead, they blame victims of their aggression, irresponsibility and exploitation. They frequently lack empathy and tend to be callous, cynical and contemptuous of the feelings, rights and suffering of others.
They often have an inflated and arrogant view of themselves, and are described as excessively opinionated and cocky. They can appear charming and talk with superficial ease, attempting to impress others and appear experts on numerous topics.
There may appear to be some overlap between Asperger’s and APD, but the resemblance is superficial. Individuals with Asperger’s have trouble understanding how people operate but they do respect others, whereas people with APD have no regard for people. Individuals with Asperger’s are rarely deceitful, in fact, they are often considered excessively, even naively honest, quite unlike those with APD who are predictably deceitful and unremorseful, and unlike people with Asperger’s they are incapable of feeling genuine love. Asperger’s people do show and feel remorse whereas people with APD do not.
People with Bipolar Disorder (BD) have distinct ups and downs in their mood. At one point, they will have extreme energy, be unusually happy, energetic, talkative, feel wonderful about themselves and “on top of the world, have little need for sleep, be drawn to unimportant or irrelevant activities, and generally act unlike themselves. When they are down, they feel sad, empty, hopeless, worthless and inappropriately guilty. They have little interest in their usual activities, have little appetite, sleep more than usual, are slowed down, have difficulty concentrating and sometimes have suicidal thoughts.
When someone with Bipolar Disorder is in a manic state or depressed they may not interact socially as they might if they were feeling normal, they might be withdrawn, lack much emotional response to situations in their life and lose interest in relationships but the changes in their emotional condition is much different than people with Asperger’s.
Someone with Asperger’s is socially awkward, cannot read or use body language or facial expressions well, have difficulty making eye contact, cannot understand sarcasm and jokes, tend to take things literally, may display socially inappropriate behavior without realizing it, have obsessive interests and may have problems with sensory issues.
While they may feel down at times or at other times be unusually happy, their concerns have much less to do with emotional ups and downs.
I am a clinical psychologist in San Francisco with 30 years of experience evaluating and treating adults with Autism Spectrum Disorders (ASD). For people who suspect they have Autism Spectrum Disorder and want a professional evaluation, I provide a comprehensive assessment of these conditions.
“This is an excellent overview for both the clinical reader and for parents. I was particularly appreciative of the compassion that Dr. Roberson shows for the patient with this disorder.”
“This would be a good first book for someone who wants to learn more about Asperger’s Syndrome (AS). Dealing with people suffering from AS can be challenging, which is why having the right source of information is necessary.”