ADVANTAGES & DISADVANTAGES OF HAVING A DIAGNOSIS
A diagnosis may prevent or reduce the effects of some compensatory or adjustment strategies, but it also removes worries about other diagnoses, such as being insane. The child can be recognized as having genuine difficulties coping with experiences that others find easy and enjoyable. When an adult has problems with the non-verbal aspects of communication, especially eye contact, there can be an assumption made by the general public that he or she has a mental illness or malicious intent. Once the characteristics of AS are explained, such assumptions can be corrected.
Children with AS have no physical characteristics to indicate that they are different, and having intellectual ability may lead others to have high expectations about their social knowledge. Once the diagnosis is confirmed and understood, there can be a significant positive change in other people’s expectations, acceptance, and support. The child is now understood and more likely to be respected. There should be compliments rather than criticism concerning social competence, and acknowledgment of the child’s confusion and exhaustion from learning two curricula at school: the academic curriculum and the social curriculum.
The advantage of acknowledging and understanding the diagnosis for parents is that, at last, they have an explanation for their son’s or daughter’s unusual behaviours and abilities and knowledge that the condition is not caused by faulty parenting. The family may then have access to knowledge on Asperger’s syndrome from literature and the Internet, resources from government agencies and support groups, as well as access to programs to improve social inclusion and emotion management that will greatly benefit the whole family. There may also be greater acceptance of the child within the extended family of friends. The parents can now provide an acceptable explanation to other people regarding the child’s unusual behaviour. It is also important that parents explain to the child that having AS is not an excuse to avoid chores and responsibilities.
Siblings may have known for some time that their brother or sister is unusual and may have been either compassionate, tolerant, and concerned about any difficulties, or embarrassed, intolerant, and antagonistic. Each sibling will make his or her own accommodations for the sibling with AS. Parents can now explain to their children why their sibling is unusual, and how the family has had to and will need to adjust and work cooperatively and constructively to implement the strategies. Parents and professionals can provide the siblings with age-appropriate explanations about their brother or sister, to give their friends, without jeopardizing their own social networks. Siblings will also need to know how to help their brother or sister at home when friends visit, and be made aware of their roles and responsibilities at school and in the neighbourhood.
The advantage for school services, especially teachers, is that the child’s unusual behaviour and profile of social, cognitive, linguistic, and motor skills are recognized as legitimate disorders that should provide access to resources to help the teacher. Confirmation of the diagnosis should also have a positive effect on the attitudes of other children in the classroom and other staff who have contact with the child. The teacher can access information from textbooks and resource programs specifically developed by the teachers of children with AS. The teacher can also explain to other children and staff who teach or supervise the child why he or she behaves and thinks differently.
The advantages of the diagnosis for the adolescent or adult with AS can be in terms of support while a student at college or university, or in employment. Acknowledgment of the diagnosis can lead to greater self-understanding, self-advocacy, and better decision-making about careers, friendships, and relationships. An employer is then more likely to understand the profile of abilities and needs of an employee with AS: for example, the problems that may arise if an employee with visual sensitivity is assigned a work cubicle lit with fluorescent lighting.
Other emotional reactions can be that an adult with a diagnosis of AS may benefit from joining an adult support group that has local meetings or an Internet support group, or a chat room. This can provide a sense of belonging to a distinct and valued culture and enable the person to consult members of the culture for advice. We also know that acceptance of the diagnosis can be an important stage in the development of successful adult relationships with a partner, and invaluable when seeking counselling and therapy from relationship counsellors.
When an adult is diagnosed with AS, there can be a range of emotional reactions. Most adults report that having the diagnosis has been an extremely positive experience. There can be intense relief: “I am not going mad”, euphoria at ending a nomadic wandering from specialist to specialist, at last discovering why they feel and think differently to others; and excitement as to how their lives may now change for the better. A young man with AS said in an email, “I know I have Asperger’s because nothing else comes even close to describing my weirdness as flawlessly and perfectly as Asperger’s syndrome does.”
There can be moments of anger at the delay in being diagnosed and at ‘The System’ for not recognizing the signs for so many years. There can be a feeling of despair regarding how their lives would have been much easier if the diagnosis had been confirmed decades ago. Other emotional reactions can be a sense of grief for all the suffering in trying to be as socially successful as others, and the years of feeling misunderstood, inadequate, and rejected.
Because Asperger’s can be stubborn, denial can be a problem. The less they acknowledge their condition, the less they can improve their social skills, and consequently, the higher the probability of them being friendless and/or victimized. Don’t think that acknowledgment solves everything (it doesn’t), but at least it brings a certain amount of self-awareness, which can be built upon. Once the person has this acknowledgment. learning the tricks of the trade – or the rules of the game – will be feasible, providing they are advised and directed by people who have at least a basic understanding of the syndrome.
There can be a new sense of personal validation and optimism, at last not feeling stupid, defective, or insane. There can be benefits in terms of self-esteem and moral support in identifying with other adults with AS. The group meetings can be initially organized by a local parent support group or by disability support staff at a large university or college that has several students registered with AS. Some support groups have formed spontaneously in large cities as occurred in Los Angeles (Jerry Newport formed AGUA – Adult Gathering, United and Autistic). There can be an affinity, empathy, and support network with fellow members of the same ‘tribe’ or clan who share the same experiences, thinking, and perception of the world.
Self-Affirmation Pledge:
• I am not defective. I am different.
• I will not sacrifice my self-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.
This last pledge is a major goal when conducting psychotherapy with an adolescent or adult with AS.
One reaction, though rare, is to deny that they have AS, insisting there is nothing wrong with or different about them. Despite acknowledging that the clinical descriptions match their developmental history and profile of abilities, they may question the validity of the syndrome and reject any programs or services. However, this may only be an initial reaction, and, given time to reflect, they may eventually accept that their personality and profile of abilities include the characteristics of AS and that this is invaluable information when making major decisions in aspects of life such as employment and relationships.
There could be disadvantages in having a diagnosis in terms of how the person and others perceive the characteristics. If the diagnosis news is broadcast widely, there will inevitably be some children or adults who misuse this disclosure to torment and despise the person with AS. Care must be taken when using the diagnostic term Asperger’s syndrome as some children may consider the condition infectious (or tease the child that it is), or corrupt the term in a variety of ways – Asparagus syndrome, Sparrow syndrome, Hamburger syndrome or Arseburger syndrome, among others. Children can be quite inventive in stigmatizing differences, but more compassionate people may be able to repair some of the damage to the self-esteem of someone with AS who has been ridiculed for being different.
One of the concerns of adults with AS is whether they should include a reference to the diagnosis that is unknown to the employer might lead to the application being rejected. A potential solution is for the adult to write a brief description of AS and the qualities and difficulties that would be relevant to the job. This personalized brochure could also be used ot explain AS to colleagues, juniors, and line managers. A shorter version can be reduced to a business card that can be given to anyone who needs to know about the person’s diagnosis.
Having a diagnosis of AS could limit the expectations of others, who may assume that the person will never be able to achieve as well as his or her peers in social, academic and personal success. The diagnosis should facilitate realistic expectations but not dictate the upper limits of ability. Successful careers can range from a professor of mathematics to a social worker, and those whose ability in the areas of relationships ranges from employing a fulfilling but celibate life, to having a life-long partner and being a much-loved parent.
As a society, we need to recognize the value of having people with AS in our multi-cultural and diverse community. Perhaps Asperger’s syndrome is the next stage of human evolution.
