HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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What Your Aspergers Child Is Likely To Face As An Adult

Moms and dads with children on the spectrum understandably want to know how their kids will cope in the future. However, Autism Spectrum Disorders (ASD) occur across a wide range of strengths and weaknesses, so making an accurate prognosis is difficult, particularly at a young age.

Even though the range of outcomes for kids on the spectrum is so broad, the possibility of relatively normal functioning in adolescence and adulthood offers hope to many moms and dads of kids with ASD. The possibility of permanent “recovery” from ASD (in the sense of eventual attainment of social and cognitive skills) has been raised in association with a number of educational and treatment programs.

Studies have revealed that there are some kids who have symptoms of ASD in early preschool years who do not have these symptoms in any obvious form in later years. Whether these improvements reflect (a) developmental pathways of very mildly affected kids, or (b) changes in developmental pathways in response to treatment, is not known.

The “core deficits” in ASD have generally been found to persist in some degree in most people on the spectrum. Although there is evidence that interventions lead to improvements, and that some ASD kids shift specific diagnoses within the spectrum, there is not a direct relationship between any particular intervention and recovery from ASD. Because there is always room for hope, recovery will often be a goal for many young people with ASD, but in terms of planning services and programs, educational objectives must describe specific behaviors to be acquired or changed.

Research on outcomes can be characterized by whether:
  • goals are short term (i.e., to be achieved in a few weeks or months) or long term (i.e., several years)
  • the goal of an intervention is broadly defined (e.g., best outcome) or more narrowly defined (e.g., increasing peer-related social skills)
  • the study design involves reporting results in terms of individual or group changes

A large body of single-subject research has demonstrated that many ASD kids make substantial progress in response to specific intervention techniques in relatively short time periods (e.g., several months). These gains occur in many specific areas (e.g., social skills, nonverbal communication, reductions of challenging behaviors, etc.). Often the most rapid gains involve increasing the frequency of a behavior already in the youngster’s repertoire, but not used as broadly as possible (e.g., making eye contact). In single-subject reports, changes in some form are almost always documented within weeks after the intervention has begun.

Many treatment studies report post-intervention placement as an outcome measure. Successful participation in regular education classrooms is an important goal for many kids with ASD. However, its usefulness as an outcome measure is limited because placement may be related to many variables other than the characteristics of the youngster (e.g., prevailing trends in inclusion, availability of other services, the parent’s preferences, etc.).

The most commonly reported outcome measure in group treatment studies of kids with ASD have been IQ scores. Studies have reported substantial changes in IQ scores in a surprisingly large number of kids in intervention studies and in longitudinal studies in which kids received nonspecific interventions. However, even in the treatment studies that have shown the largest gains, the youngsters’ outcomes have been variable, with some making great progress and others showing small gains. Overall, while much evidence suggests that education and treatment can help ASD kids attain short-term goals in targeted areas, gaps remain in addressing larger questions of the relationship between particular techniques and both general and specific changes.

In recent years, there has been a marked increase in the percentage of ASD kids who can attend school in a typical classroom and go on to live independently in community settings. While it is more likely that a higher-functioning youngster will progress faster and further than a lower-functioning one, every son or daughter with ASD grows and progresses. Many ASD kids far exceed doctors' expectations, and a significant percentage of these children actually lose their official ASD diagnosis. Some improve slowly and to a limited degree, while others improve quickly at first and then seem to hit a plateau, or develop issues (e.g., a mood disorder) which inhibit ongoing improvement. Also, there is no "window of opportunity" for growth and development. Kids with ASD don't suddenly stop progressing at a particular age. In fact, even grown-ups on the spectrum can benefit significantly from behavioral therapy, speech therapy and occupational therapy.

Kids with High-Functioning Autism may see a lessening of symptoms as they mature, and up to 20% may no longer meet the diagnostic criteria as grown-ups (although social and communication difficulties may persist). People with High-Functioning Autism appear to have normal life expectancy, but have an increased prevalence of comorbid conditions (e.g., major depressive disorder, anxiety disorder) that may significantly affect prognosis. Although social impairment is life-long, the outcome is generally more positive than with people on the lower end of the spectrum.

Although most children with High-Functioning Autism have average mathematical ability and test slightly worse in mathematics than in general intelligence, some are gifted in mathematics. Although many attend regular education classes, some may utilize special education services because of their social and behavioral difficulties.

Teens with High-Functioning Autism may exhibit ongoing difficulty with self-care or organization, and disturbances in social and romantic relationships. Despite high cognitive potential, some young people with High-Functioning Autism remain at home, although most do marry and work independently.

The "being different" that these teens experience can be troubling. Anxiety may stem from preoccupation over possible violations of routines and rituals (e.g., being placed in a situation without a clear schedule or expectations, concern with failing in social encounters, etc.), and the resulting stress may manifest as inattention, withdrawal, obsessions, hyperactivity, and aggressive or oppositional behavior. Depression is often the result of chronic frustration from repeated failure to engage others socially. Research suggests the rate of suicide may be higher among those with High-Functioning Autism.

All kids on the spectrum have different strengths and weaknesses compared to “typically developing” kids. For example, even if your son or daughter never learns to write in cursive, he may have impressive technical skills. In any event, age at intervention has a direct impact on outcome. The earlier a youngster is treated, the better the prognosis will be.

So what can parents expect to happen when their child with High-Functioning Autism (Asperger’s Syndrome) becomes an adult?

1. Grown-ups with High-Functioning Autism are a minority among the ASD community, making up just a small percentage of those diagnosed with ASD. Since their numbers are so small in relation to the ASD community as a whole, the resources and information relevant to grown-ups with High-Functioning Autism can be much less prevalent than those geared towards kids, teens and adults with more severe forms of ASD. In addition, some grown-ups with High-Functioning Autism feel their struggles discounted by many in the ASD community as being insignificant compared to the hardships faced by those more profoundly challenged. These factors and others combine to make many with High-Functioning Autism feel isolated from the ASD community, their concerns and struggles marginalized by the majority.

2. ASD awareness has risen dramatically over recent years, resulting in more information and resources available to address the needs of the ASD community. Kids with High-Functioning Autism certainly benefit from these resources, with access to necessary intervention services from infancy and throughout the schooling years. On the other hand, grown-ups with High-Functioning Autism can fall between the cracks of today's safety net of ASD resources and services, their symptoms seen as too mild to qualify them for the support received by more severely affected individuals.

3. Even the most mildly affected among people with ASD face challenges in managing their condition. For example, those with High-Functioning Autism are statistically more prone to depression than the average guy or gal, and low self-esteem and loneliness are common problems. Affordable resources to address these issues can be hard to find, especially in grown-ups for whom these issues have made keeping a job difficult. Added to that is the fact that less severe symptoms can make applications for medical and psychological assistance less likely to be approved.

4. Grown-ups with High-Functioning Autism face the unique challenge of straddling the fence between the ASD community and the community at large, often feeling as if they don't quite fit in with either. The term High-Functioning Autism is used to describe people who meet the criteria for a diagnosis on the spectrum, but show no cognitive delays, and are able to speak, read and write, as well as have IQ scores of average or above. Those with High-Functioning Autism do suffer difficulties in communication, language, and social interaction typical of Autistic Disorder, as well as repetitive behaviors and narrow interests associated with the condition. Abstract language concepts, (e.g., irony and humor) may well be beyond the comprehension of adults with High-Functioning Autism.

5. Many individuals with High-Functioning Autism are able to blend into society as well as anyone, learning to manage their condition to build successful and independent lives. Many find their niche in society quite nicely, with satisfying careers, successful marriages, fulfilling friendships, and active social lives. To the average person, untrained in the subtleties of ASD, these high-functioning individuals may not seem as if they have any autistic traits, sparing them the assumptions and prejudices faced by those with symptoms that are more obvious. Others have more difficulty establishing themselves, finding that their challenges in social awareness and communication create issues that can make independent living difficult. Often, people with High-Functioning Autism are misunderstood by those who lack experience with ASD, and their lack of social awareness and interaction may be construed as rude behavior. Symptoms (e.g., inability to maintain eye contact during conversation) can make job interviews and establishing friendships difficult, as some individuals often misinterpret the behavior as dishonesty or a lack of interest.

6. Many grown-ups with High-Functioning Autism face an uphill battle in establishing lasting personal relationships, facing the same misconceptions in personal friendships as in workplace ones. Actions that result from a lack of understanding of non-verbal cues (e.g., body language, facial expression, etc.) can leave people with the impression that adults with High-Functioning Autism are self-absorbed and selfish.

7. Steady employment can be a challenge to some high-functioning individuals. While workers with High-Functioning Autism are very often extremely bright, focused, and talented employees, the social aspects of the workplace can be their undoing. Workplace camaraderie can be unfamiliar territory for those with social interaction difficulties, the small talk and humor beyond their grasp. Co-workers who are not aware of the difficulties faced by those with High-Functioning Autism may see them as odd due to behavioral symptoms, or too serious, aloof, or arrogant because of the social awkwardness that accompanies the condition. These misunderstandings can breed resentments among co-workers, causing dismissals by employers in order to keep peace in the workplace.

8. While ASD research and management has improved by leaps and bounds over recent years, many of the difficulties faced every day by people with High-Functioning Autism make it clear that much more work lies ahead. Both in the ASD community and in mainstream society, lack of education and misunderstandings abound, leaving many of those affected by High-Functioning Autism feeling stranded, with one foot planted in each world – but truly at home in none.

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4 comments:

Audrey said...

I really find numbers 3, 4, and 5 affect my life...it is tough never really fitting into either camp- not fully autistic and not fully NT...people assume either way and I am finding myself less inclined to actually explain anymore. I find being an adult with AS enriching and also heartbreaking depending on the circumstance. Luckily for me I have supportive husband, kids and best friend but there is still that invisible line. Thanks for writing this. Even though I felt like crying a bit because unfortunately most is true, it was also strangely validating and I felt less alone at the same time:) ( If I commentated before and it went through just erase one...I thought it did not go through...)

Steve Borgman said...

Mark, thanks for writing such an in-depth and informative article. High functioning people with autism do face the 'invisible' nature of disability because they "appear" to fit in, yet are seriously impaired by some of their neurological differences. I hope that, as this generation of high functioning young people grow up, increased funds and advocacy will result with wider acceptance that these people have their own employment and assistance rights.

Steve Borgman said...

I hope that, as young people with high functioning autism grow older, society at large will grow in its funding and awareness. High functioning autism's "invisible" differences are very real, and employers and families need to be aware of them.

Jeena Smith said...
This comment has been removed by the author.

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