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.

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.

ASD Treatments

  • Behavior and Communication Therapies
  • Education Therapies focused on social skills, communication and behavior
  • Parent Training (PT) focuses on the transfer of knowledge and information to parents to provide the skills needed to care for their child at home and in the community. Topics include: behavioral principles, behavior management techniques, play activities, social skills, augmentative communication strategies and visual communication techniques. Role playing, homework assignments and ongoing review and feedback are key components to the training
  • Medication is used to manipulate chemicals in the brain (Dopamine System: attention/ planning/ deep subcortical structures. Serotonin System: involved in almost every part of the brain)


Alternative Medicine

  • creative therapies (art/ music/ sensory integration)
  • special diets: food allergens/ probiotics/ yeast free diet/ gluten free diet/ casein free diet/ supplements: A,C, B-6, Magnesium, Folate, B-12, omega-3 fatty acids.
  • Chelation therapy


Why So Many Dead Ends?

  • ASD Rx has not been a priority for psychopharmacologic research.
  • Complex ASD population
  • Inadequate tools to determine mental health comorbidity
  • Scarce outcome studies
  • Disorganized multicenter approach
  • Short history of ASD medication Rx


General Rules for Medication Use:

Start low and go slow/ beware of medications in combination/ simpler is almost always better.

“When there is no cure there are always many proposed treatments”

Medication does not cure any psychiatric disorder.

Medication is never a substitute for psychosocial or educational therapies.

Focus on a child’s profile and symptoms.

Target the symptoms.

Seek a balance between efficacy and tolerance and periodically re-adjust your medication plan.

Improved quality of life for your child in and out of your home is the goal.

Risperdol (risperidone)/ Abilify (aripiprazole): Irritability/ hyperactivity/ stereotypy/aggressive behavior/SIB/ ritualistic behavior/ sleep problems. FDA has approved Risperdal for the treatment of irritability and mood instability associated with autism in children ages 5-16 years (aggression/ self injury/ temper tantrums).

Dosing for Risperidol: Children weighing 14 to 20 kg started on 0.25 mg/day with gradual increases to a maximum of 1.75 mg.

For youngsters weighing 20 to 45 kg, dosing started at 0.5 mg/day and graduated to a maximum of 2.5 mg/day; for children weighing > 45 kg, dosing started at 0.5 mg/day with gradual increases to a maximum of 3.5 mg.

If fail on Risperdol consider off label use of Abilify.

Consider off label use of Geodon (ziprasidone) for refractory

Self injurious behavior (SIB) that does not respond to the other medication.

Ritalin (methylphenidate): improved inattention and overactivity (Increased SE profile: tics/ social withdrawal/ irritability/ decreased appetite).

Non-stimulant medication: clonidine/ tenex/ intuniv. Alpha 2 agonists. Possible benefits in hyperactivity/ inattention/ insomnia/ tics. SE: BP change/ drowsy/ dry mouth/ constipation/ HA/ dizziness/ vomiting/ GI upset/ rashes/ nervousness. Strattera (atmoxetine): improved hyperactivity.

Antidepressant medications: potential benefits for repetitive behaviors, mood and anxiety. (decrease in outbursts/ rituals/ repetitive thoughts/ anxiety/ depression leading to potential benefits of improved social relatedness, language usage and eye contact.

SSRI: Appears to be reasonable due to anxiety and repetitive OC-like behaviors/ used for repetitive behavior and anxiety: not proven. Study in 2009: Celexa (citalopram) no better than placebo/1/3 of patients from placebo and celexa improved/ higher rates of SE’s/ disinhibition syndromes: HA/ impulsivity/ insomnia/ decreased concentration/ increased energy levels/ stereotopies/ diarrhea.

Mood Stabilizers: commonly used in BPD/ lithium/ AED (VPA/ Tegretol/ Lamictal/ Topomax/ Keppra). Many potential side effects.

What to do if you have an Aggressive Child?

The initial step to deal with aggressive behavior is to assist parents in obtaining evidence based parent and child skills. These skills need to be age and developmental specific. Cognitive, behavioral and affective patterns of the child need to be integrated into the types of services and intervention provided. These services can be provided by any professional with expertise in the skills necessary for your child.
The engagement of families and children improves success and compliance. This can be done through supportive services and information available in the office and through online resources, including social media.
The importance of identifying and choosing target behaviors with parents is vital for short and long term success. If a primary issue or antecedent can be identified then this should be addressed first. In doing so the goal is to avoid the use of medication if the cause of the aggression can be identified and eliminated.
Antipsychotic medication is effective in treating aggressive behavior. The use of medication can protect and revitalize families who are in severe and often dangerous discord. Studies and information about comparative use of antipsychotic medications in pediatric populations is limited. Information suggests there are more adverse metabolic outcomes for clozapine and olanzapine than for quetiapine and risperidone. No matter what medication is chosen close follow-up and dose titration is needed and caution used when tracking behavioral responses which are highly variable and may be independent of ongoing issues. Target symptoms and monitoring parameters need to be chosen and closely followed.
When antipsychotic medication and psychosocial interventions are inadequate the use of a mood stabilizer should be considered. Although the use of the “fewest medications possible” is the golden rule, children with complex conditions may require multiple medications to deal with specific symptoms. At all times every chosen medication must be selected with the individual patient in mind. Lower risk medications with potential sustained benefits and known patterns of positive compliance should be chosen first, if possible.
During every step in this treatment process parents and family members need to be engaged and involved in observation and decision making. A therapeutic alliance with the family will foster success.

Adolescents with ASDs

Adolescents who have an autism spectrum disorder (ASD) commonly have difficulty initiating and maintaining friendships. Peer interactions often are limited and this leads to frustration, anger and social isolation. Bullying can also occur as does acting out and challenging behaviors. These adolescents have difficulty recognizing and following accepted social norms. This lack of awareness leads to the adolescent with an ASD being identified by peers as being “different” and further social isolation that is peer and not self- induced often occurs.

Adolescents with ASDs have difficulty matching their interests to others. This pattern of special interests leads to further social isolation and decreased peer commonality. They may also have associated problems including auditory processing, executive function, anxiety and ADHD that further complicate social interaction and limits reciprocal social communication.

How do you recognize an adolescent who may have an ASD? The first step is to look for a longstanding pattern of preference for solitary activities. A recent pattern of separation would suggest depression. Look for difficulty with recognition of nonverbal social cues that limits the adolescent’s ability to understand the intent, purpose and meaning of others. Do they have difficulty making or keeping friends? Do they have highly developed or specialized interests that are appropriate for younger children or are excessive for their age? Is their eye contact limited? Do they have repetitive mannerisms of their hands or fingers? These are all signs to suspect and ASD.

You must recognize adolescents with an ASD and adjust your interaction style to meet their needs. The goal is to support healthy lifestyle behaviors including healthy diet, exercise and adequate sleep. Stress must be managed and the integration of physical activity into every day is essential. Focus on safety and security issues that place the adolescent at risk. Discuss sexuality and bullying issues openly and support age and socially appropriate peer activities.

Adolescents with an ASD have the same puberty onset patterns as neurotypical adolescents. They also have the same interests in sexuality. A difference, however, is they may have an inadequate understanding of issues relating to friendship and social cues relating to relationships. Often language for these adolescents is concrete and rigid and increases misunderstandings. These responses lead to an interpersonal disconnect and unsettling behaviors and responses often develop. If there are associated intellectual delays there can also be difficulty with self-care, personal hygiene, safety and birth control.

Maternal Obesity Risk for ASD

Every parent knows there are multiple risk factors for autism spectrum disorders (ASDs). The specific causes have not been determined. Reviews have been performed and the following patterns have been found to be associated with an increased risk for autism: advanced maternal age, maternal prenatal medication use, gestational diabetes, being the first-born vs. the third child or later and having a mother born abroad are all associated with an increased risk for autism.

Recent reports support metabolic conditions in women being associated with an increased risk of that mother having a child diagnosed as having an ASD. The primary metabolic conditions are diabetes, hypertension and obesity. Not only are these women at greater risk for having a child with an ASD but also having a child with developmental delays without autism. Obese mothers are 1.6 times more likely to have a child with an ASD and twice as likely to have a child with developmental delay.

It is unclear what role these conditions play and whether it may be similar to other non-specific risk factors like prematurity and birth complications. There appears to be an association especially when the obesity risk factor was included but causality was not suggested or proven. Research on the causes of ASDs is ongoing but answers will come slowly. If you have any of the above conditions it is important to address your concerns with your doctor. By opening a two way conversation you will be better able to deal with any fears these reports cause and help you begin a successful collaborative treatment program. Certainly, this information may encourage women to address weight issues and that is helpful for a healthy pregnancy and a healthy newborn.

Maternal health is important not just for the increased risk of having a child with an ASD. It is vital that maternal self-care be integrated into the life of every mother. Each mother must take care of her own needs first if she is to have the best opportunity to be able to take care of the needs of her child when issues arise.

Speech Services

Children with autism spectrum disorders (ASDs) have  a wide range of speech capabilities. This can range from little or no expressive language to highly developed language skills with some associated pragmatic language impairments. As a parent you are in the best position to work with your child to improve attention, communication interest, language intent and language skills. This is done in conjunction with a Speech Language Pathologist (SLP) and is incorporated into home and school settings.

Individual and group support is determined by the needs an capabilities of each child. Some children with ASDs are overwhelmed by sensory and environmental stimuli and respond best to small or individual settings. The focus is on the integration, acceleration and expansion of imitation and social communication. Treatment by a speech-language pathologist is appropriate for all children with an ASD. Useful or communicative speech can be achieved by most children with ASDs. No child should be excluded due to age, lack of prior speech service gains, lack of prerequisite skills, or low IQ scores. The focus must be on services based on intense close collaboration and subsequent extension to group intervention for social skill training when appropriate. Traditional pull out services are often ineffective due to the lack of frequency, intensity and the limited environmental integration of services to natural settings throughout the day. Training for parents, teachers, peers and all caretakers must be integrated into the speech services. The goal is to promote functional communication in natural settings both in and out of the home.

Augmentative communication strategies can be very effective in increasing functional communication. This often involves a Picture Exchange Communication System (PECS) and the use of gestures, signs and alternative communication techniques. Let no stone unturned. Find the type of interaction your child enjoys and prefers and utilize it to facilitate communication. Initially the communication may be unidirectional about what your child wants but the goal is reciprocal communication where there is sharing of feelings, thoughts, words and actions. Augmentative strategies do not hinder the long or short term ability to talk. By increasing symbolic language they increase future ability to speak and communicate.

Understanding Executive Function

When someone talks about executive function skills they are describing a wide range of cognitive abilities that include both planning and plan execution;  selective, shifting and sustained attention; appropriately sequenced task completion and the inhibition of competing inappropriate responses. These skills are often described as being frontal lobe in origin and related to the cognitive deficits seen if someone experiences an injury to the frontal lobes of the brain. These are common injuries due to the high risk of injury to the frontal lobes when a physical injury causes twisting and shearing of fibers within the brain. Many of these symptoms are the same symptoms described in a post-concussive brain injury.  An understanding of the problems associated with such an injury is vital to appropriate rehabilitation.

Common problems include difficulty with insight and problem discrimination, project planning and realistic expectation setting and all the components of attention. It is clear difficulties with one or all of these issues would hinder cognitive rehabilitation including the ability to identify and respond to social cues while initiating and maintaining relationships.

A return of function does not mean a restoration of past skills or expectations. It means the identification and realization of skills that allow those with executive function disturbances to achieve chosen goals for healthy and successful daily functioning.  The focus is on the development of compensatory strategies and accommodations to provide the mechanisms for success in home, work and school environments.

The training of working memory which is the term used to describe our ability to mentally manage and update information is the foundation for executive function rehabilitation and improvement.  The use of computerized adaptive programs has shown clear benefits and enhanced performance in children diagnosed as having ADHD. Other potential intervention options include educational approaches that focus on a staged, step by step approach which slows down problem solving and decision making into component parts to encourage thoughtful information assessment. Other training techniques include training that includes dual task completion and the use of reasoning skills to extract essential decision making details.

Difficulty with social awareness and an understanding of the thoughts, words, needs and actions of others are common executive function deficits. In our daily lives we need to decode the social intentions of others.  An inability to do so can lead to poor decision making and social disasters. The use of the same techniques discussed above can lead to improvement in social decision making and an awareness of the emotional intents of others. An understanding of contextual emotions is vital for the understanding that provides a bridge for the development of relationships.

As a final note, those with executive function disturbances must be aware of the increased risk of error when fatigue, time pressure and distraction are in play. The need to incorporate an awareness of these stressors into one’s choice of a decision making environment must also be both taught and learned.  Such an understanding allows a child or adult to develop intention and action plans that are both reasonable in expectation and outcome.