Quality of Life in Autism

For children and adults with autism an inspired quality of life is essential. For this to be achieved physical, psychological, social, spiritual and practical living and leisure components must be recognized, understood and addressed. The focus must be on optimizing communication skills, the ability to live in a community, the learning of functional skills that support employment and group engagement and elimination of behavioral challenges that lead to self injury or inhibit family and community functioning.

Quality of life is determined by the person with autism and not by you. Safety, legal and health issues must be identified and solved but the focus must be on the perspective of the individual with autism rather than your perspective.

The role of the community is to be supportive, available and non-judgmental. Early identification and acceptance are essential as is the provision of all reasonable and non-restrictive services that open the doors of opportunity for the persons of all ages with autism.

For the person with autism quality of life support must include personal and social opportunities that allow and foster the initiation and maintenance of relationships with individuals and with the community. Environmental and financial supports are also essential and must be individualized and reassessed on an ongoing basis.

An inspired quality of life focuses on strengths rather than difficulties. It must be skill and interest based rather than deficit dependent and must provide opportunities for the individual with autism to live, work and create as a member of a family and a community. The availability and access to leisure fun activities and everyday living opportunities such as shopping and transportation must be a priority. Intellectual disability and deficits of reactivity and regulation that are often the cause of behavioral challenges must be dealt with. Access to and participation in medical care that responds to both physical and mental health issues must also be integrated into the daily life of those with autism.

A quality of life balance can only be achieved if job opportunities, day care, group home and supportive training programs are available that allow a matching of needs, skill sets and interests. The avoidance of high risk situations that lead to cumulative stress and behavioral reactivity and challenges is essential as is an awareness of organizational skill deficits and sensory sensitivity.

An inspired quality of life is the dream of every parent whose child is diagnosed with autism. It is your role and the role of every community member to help every person with autism find an inspired quality of life.

Autism Treatment

The first step in autism treatment is identification. Look for the common signs of autism and talk to your pediatrician. Make sure screening is done by your doctor at your child’s 18 month and 24 month visits. Treatment and intervention can only begin after a diagnosis is made. The average age of diagnosis is after age 4 years yet present screens that can be performed by you at home or in your pediatrician’s office have the capability to identify children under age 2 years.

Once you have a concern the next step is a comprehensive medical evaluation and vision and hearing testing. Make certain your child is tested by a professional who has the skills to test young children and children with behavioral or developmental problems. Further developmental testing by Early Intervention, a Child Neurologist or a Developmental Pediatrician should then be pursued. This allows individualized testing to be obtained based on your child’s examination and history. Such testing may include specialized laboratory testing and neurological testing.

Intervention must include services to respond to the social, emotional, educational and physical needs of your child. All services must be supportive of your whole family and must respect personal, religious, cultural and ethnic preferences.

The most common intervention includes child focused intensive behavioral intervention that is also family supportive. Services must be provided both in and out of home and include parent and caregiver training. The purpose of all services is to provide intensive and child specific intervention that supports community and in home functioning. Specific attention must be directed to behavioral challenges that commonly exist and a focus on age specific group integration that is provided under the supervision of a highly trained individual.

Services should be evidenced based and provide outcome information to aid parents in choosing services. These services must be highly structured, individualized and include positive reinforcement while avoiding negative reinforcement. Service ratios are very important and in the initial treatment phase 1:1 supervision is often required if there is to be success in transitioning from a controlled to a naturalistic environment both in and out of the home.

Parent education and support services must also be part the treatment program. The focus must be on fostering collaboration between everyone involved in the care of the child or adult and identifying and pursuing reasonable and non-restrictive strategies that “work.” Connections and networking with available community services and the development of unavailable necessary community services are also essential if the transition from child to adult care is to be successful.

About Autism

Autism is a common complex neurobiological disorder with a wide spectrum of presentations, a strong familial genetic pattern and an uncertain cause. Family history is very important as is making sure there are no hearing or vision problems.

Published statistics for the prevalence of autism continue to increase. The most recent statistics suggest prevalence to be between 1 in 68 and 1 in 40 for school-aged children. The cause of this increase in prevalence is uncertain. Likely, an increased awareness about autism and improved diagnostic capabilities has led to the prevalence increases. Autism is a major global concern that is not limited by geography, culture or ethnicity. It is found much more commonly in boys than girls (5 times more common in boys than girls) but it is felt many girls with autism are underdiagnosed due to relative sparing of social and communication skills. Children from socio-economic groups who have limited access to medical, educational and developmental services also have a lower prevalence.

Children and adults with autism have core deficits in communication, social skills and typical behaviors. The reactivity and regulation difficulty that accompany these deficits often lead to behavioral challenges for both the individual with autism and the family.

About one-third of children and adults who are diagnosed with autism also have an intellectual disability. Two-thirds have normal to above average intellectual skills and very high functioning capabilities are seen in many individuals with autism.

Three primary deficit areas include social reciprocity, language and repetitive patterns of behavior, activity or interests. Patterns of interest include unique or unusual fascinations, excessive attachment to objects, sensory aversions to sounds, food and clothing and repetitive motor activity such as hand flapping or running or spinning in circles.

Skills that suggest your child does not have autism include reciprocal smiling by 2 months, laughing and giggling by 5 months and name response by 12 months. Reassuring social skills include eye contact during early infancy, playing peek-a-boo by age 9 months and the ability to copy your gestures such as waving, clapping and pointing by 12 months and waving bye-bye by 15 months of age. For toddlers an interest in imitating you is also a sign of normal development. The ability to share focus and attention by pointing at objects prior to 18 months is another reassuring skill. Remember, all infants and children are different and it is best to not over compare developmental milestones in children. If you have doubts about your child’s development you should talk to your pediatrician.

Autism traits vary with age. For infants and toddlers irritability and a lack of social interaction interests are common. Delays in language, shared gaze and interest or pleasure are the most common complaints. Excessive, unusual, unique, peculiar or repetitive behaviors, activities and interests are also common. For the school-aged child, a delayed ability to connect with others and a rigid and inflexible behavior pattern is the most common historical complaint. Social issues include being overly bossy, a lack of interest in being with people or preferring isolation. Language delay and abnormal language patterns such as word or phrase repetition, repetitive questioning and unusual speech tonality are the most common language difficulties. For teens and adults difficulty with social relationships, shared social interests, communication, rigidity, a lack of social cue awareness and executive function disturbances are the most common signs.

What is Keratosis Pilaris?

This is a common problem where small bumps like “goose bumps” appear on your skin. It is a disorder of keratinization where small papule (bumps) form with occasional redness around the bumps. It is commonly seen and felt on the anterior thighs, triceps area and cheeks. It is commonly seen in children who previously were diagnosed as having atopic dermatitis. Up to 10% of all children may experience this rash. It is commonly seen in children and teens and can be seen in infants.

The cause is not clearly known. There appears to be a familial pattern. Under a microscope plugs of skin cells (keratin) with one or more twisted hairs block hair follicle openings. The most common complaint is “rough and raised” bumps on the skin. It increases during the winter months and seems to be worsened by friction from clothing. Although it often persists into adulthood it usually improves after the teen years. It may increase during pregnancy.

Patience, lubrication and time are usually the best treatments. Emollients and topical keratolytic medications containing lactic acid, salicylic acid or urea can help soften the plugs. They do not help with any surrounding redness. A common preparation has 2% salicylic acid in 20% urea cream. It must be applied consistently for several weeks to see a benefit.

If your child does not respond to the above treatment then topical retinoids such as tretinoin 0.05% cream or adapalene 0.1% cream may be used. These usually require 2-3 months of treatment to see benefits. If there is redness and signs of inflammation then a topical low to medium strength corticosteroid can be used for several weeks.

Your Child Has Autism

“Are you sure?” She asked. “Yes, I am,” I answered. She and her husband leaned into my words. Unwavering and unbroken eyes filled with strength, vulnerability, confidence and dignity met mine. Without turning they reached out to one another and held hands. “Can you help us?” I nodded and took their hands in mine. “I believe in both my heart and my mind that your child is a perfect blessing. I can and will help you.”

The diagnosis of autism is given more often every year. The frequency of your newborn child being diagnosed with autism has increased 30% in two years. This is an estimated prevalence of one in 68 children and one in 42 boys. Although about one-third of children diagnosed with autism have an intellectual disability 23% have borderline intellectual disability and 46% score in the average or above average range of intellectual ability.

Children with an autism spectrum disorder (ASD) must be identified early if we are to ensure proper services for each child and every family. Early identification and intervention are the duty and responsibility of everyone. We must work together to deliver and coordinate the services every family deserves and requires. Each of us must find the time, energy and commitment to serve as thoughtful stewards to make this happen.

What can you do? First, you must believe. You must believe the diagnosis of autism is not a death sentence imposed on the weak, the less fortunate and the unwilling. This diagnosis is a blessing for us, the child and the family. Through understanding we can seek acceptance and allow the words autism spectrum disorder to fill our hearts and our minds with compassion, understanding and empathy.

When most people hear the word autism they see the words marginalization, limitation and grief rather than perfection, inclusion, opportunity and happiness. Children and adults with autism have been forged from love and designed for glory. Each of us has the responsibility to allow children and adults with autism to live a life not of perfection but rather of contribution. Every child and family who lives with this diagnosis blesses each of us with the opportunity to give more than to receive. They provide each of us the opportunities to learn to live life rather than manipulate life. They teach us to seek balance rather than success as well as the opportunity to create a life based on love and contribution rather than money, self-interest, praise and achievement.

Children and adults with autism provide each of us with the opportunity to discover and live a life filled with kindness, compassion and an understanding of both the perfection and equality found in life and death. The month of April is Autism Awareness Month. I challenge each of you to reach out to a family of a child, teen or adult with autism and share in this perfection.