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Individuals severely affected by an autism spectrum disorder, particularly those with intellectual disability, significant expressive language impairments or self-injurious behavior, have been understudied. Up to 50 percent of children with autism fail to develop functional language, 30 to 50 percent have intellectual disability, and up to 55 percent have a lifetime incidence of self-injurious behavior.

Adequate phenotypic and biological data from severely affected individuals are lacking. This gap in our knowledge is particularly striking given that communicative and cognitive abilities are the best predictors of long-term outcomes in children with autism. Barriers to studying severely affected children include challenges in their recruitment and participation in outpatient research studies, limited contact of most investigators with this population, and a relative lack of validated measures for characterizing these individuals.

Matthew S. J Autism Dev Disord. Doi: McGuire K and Siegel M, Psychiatric hospital treatment of youth with autism spectrum disorder in the United States: needs, outcomes, and policy. Int Rev Psychiatry. Epub Mar Autism Research , Risk factors for self-injurious behavior in an inpatient psychiatric sample of children with Autism Spectrum Disorder. J Aut Devel Disord. Predicting proximal aggression onset in minimally-verbal youth with autism spectrum disorder using preceding physiological signals.

Behavioral outcomes of specialized psychiatric hospitalization in the Autism Inpatient Collection AIC : a multisite comparison. Sleep problems and their relationship to maladaptive behavior severity in psychiatrically hospitalized children with Autism Spectrum Disorder ASD. Verbal ability and psychiatric symptoms in clinically-referred inpatient and outpatient youth with ASD. J Autism Devel Disord. Behavioral symptoms of reported abuse in children and adolescents with Autism Spectrum Disorder in inpatient settings. Predictors of inpatient psychiatric hospitalization for children and adolescents with Autism Spectrum Disorder.

Characterization of medication use in a multicenter sample of pediatric inpatients with Autism Spectrum Disorder. Mol Autism. J Child Adolesc Psychopharmacol. Psychiatric hospital treatment of children with autism and serious behavioral disturbance. Improving psychiatric hospital care for pediatric patients with autism spectrum disorders and intellectual disabilities. At a minimum, patients should be included in discussions about decisions that impact them. At those meetings, physicians and others present should communicate directly with patients, even if they do not reliably respond.

Individuals who accompany patients to appointments or who provide personal assistance have traditionally been called caregivers. However, the term supporter can encourage person-centered thinking that respects the patient's autonomy, even if the patient requires assistance to communicate or make decisions. They can provide ancillary information, translate or interpret unclear speech or nonverbal communication, and break down concepts in a way the patient can understand.

They can also report back if the patient needs time to process information outside of the appointment or help implement the health care plan. Supported decision making is a paradigm, support practice, and emerging legal structure that focuses on assisting patients with communicating their wants and needs. It is an alternative to guardianship or power of attorney, which rely on the opinion of a third party to determine what is in the patient's best interest. Instead of transferring decision making to a power of attorney or having a judge or hospital protocol assign a proxy decision maker, patients choose one or more supporters they trust, select the type of support they want, and receive help to make decisions or to communicate.

Supported decision making acknowledges that a person's capacity fluctuates, while assuming that the ability to make and communicate choices often improves with support. Even without disabilities, learning to make decisions in one's own best interest takes practice, some risk-taking, and learning from mistakes. Supported decision making affords persons with disabilities the same opportunity. In patients with complex disabilities, illness often presents as a change in behavior or function.

Therefore, when establishing care, it is critical to get a detailed history of baseline traits and characteristics in the areas of cognition and communication; neuromuscular function; sensory function such as vision, hearing, and sensory processing; seizure threshold; mental health; and behavior.

This baseline assessment will also help determine whether the patient is at risk of secondary medical problems and which primary and secondary prevention strategies, accommodations, and adaptive equipment are most likely to be beneficial Table 2 15 — Gastrointestinal constipation Review diet for adequate fiber and fluid intake, and check for medications that may contribute to constipation. Evaluate wheelchair seating to ensure the patient's nose, umbilicus, and knees are facing the same direction, which may help with bowel motility and a strong Valsalva maneuver.

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Oral Teach supporters to position themselves behind the patient when providing oral care, with the patient's head held back and to the side to protect the airway. Consider recommending adaptive toothbrushes; water pic and suction; xylitol gum or spray; antimicrobial agents, such as chlorhexidine Peridex ; and clearing food and rinsing the mouth with water after meals.

Musculoskeletal Customize seating for wheelchair users to reduce pressure points and provide support. Assess for occult fractures, which can easily be missed in patients with communication difficulties. Instruct supporters to lift from the patient's core rather than extremities to prevent fragility fractures. Consider prescribing calcium and vitamin D supplements for the prevention of osteoporosis, especially if there are risk factors such as wheelchair use, nutritional problems, use of medications that inhibit absorption, or limited exposure to sunlight.

Respiratory care Treat gastroesophageal reflux, which may present as cough as well as erosion of tooth enamel. For patients with dysphagia, consider ordering a swallow study to optimize food texture and feeding procedure to prevent aspiration. Consider prescribing a nebulizer for inhaled medication in patients who cannot use metered dose inhalers correctly.

Neurologic Assess for occult spinal cord and peripheral nerve compression, which can easily be missed in persons with communication and baseline functional limitations. Prescribe exercise to maintain strength and range of motion, especially during hospitalizations and illnesses.

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Prescribe rehabilitation for any loss of function from deconditioning, especially after hospitalization. Skin Consider ordering a pressure-reducing mattress. For patients who pick at skin, evaluate boredom or anxiety and explore possible replacement behaviors. Information from references 15 through Most adults with developmental disabilities have had genetic, diagnostic, cognitive, speech, occupational, physical, educational, vocational, or developmental assessments.

If assessments are outdated, referrals may be warranted. Accurate and thorough record keeping is critical because patients and supporters may not be able to provide a detailed medical history. Some conditions, such as dementia, may be more difficult to diagnose in the future without this baseline information. Systematically comparing current with past function is essential to recognizing treatable medical problems and rehabilitation potential. Each area of function should be assessed independently because deficits in one area can be mistaken for deficits in another.

For example, many patients who cannot speak or hear are assumed to have intellectual disabilities. Patients who routinely use wheelchairs to attend medical appointments may also be able to stand, walk, or crawl up stairs. Strengths in one area can mask challenges in another. For example, a patient who is fluently conversational may have significant problems with basic activities of daily living because of issues with memory or executive function that are not apparent in an examination room.

In general, guidelines for age-appropriate health maintenance in the general population should be followed for those with developmental disabilities unless the risk outweighs the benefit for an individual patient. In addition, because targeted physical examination and diagnostic testing may be less reliable in persons with communication, sensory, or cognitive challenges, physicians should be proactive at health maintenance visits to identify possible health problems with a complete history, physical examination, screening tests, and functional assessment.

Chronic gastroesophageal reflux causing damage to the enamel Craniofacial anomalies. Medications Additional sugar intake if the medication contains sugar. Information from U. Department of Health and Human Services. National Institute of Dental and Craniofacial Research. Developmental disabilities and oral health. Accessed April 18, Studies of comprehensive yearly health checks in persons with developmental disabilities reveal that unrecognized and undertreated medical problems are common.

Examples of presenting signs and symptoms of commonly unrecognized and undertreated conditions in patients with developmental disabilities are included in Table 3. Ensuring timely care may require more frequent office visits and adjustments to office protocols. Shortness of breath or cough with or after meals, slight elevation of body temperature, tachycardia.


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Endocrine or metabolic disorders especially hypothyroidism and syndrome of inappropriate antidiuretic hormone. Irritability; insomnia; decreased participation; change in function; aggression; scratching, banging, or touching the body part that hurts. Persons with developmental disabilities can and do have sex, marry, and have children. Gender dysphoria has been found to be particularly common among persons with autism.

Because pain is an internal sensation, communication difficulties can complicate the assessment. Persons with developmental disabilities often have atypical behavior in response to pain. For example, they may not grimace, cry, or clutch the part of the body that hurts. Supporters often report that patients with developmental disabilities have a high pain threshold. This interpretation may be accurate because of atypical sensory processing, or the patient may feel the pain but does not show recognizable signs of distress.

Conversely, some persons with developmental disabilities may be sensitive to normally benign stimuli such as touch, sounds, or abrupt changes in light, which create painful sensations. Empiric trials of pain medication may be necessary when assessment is uncertain. Persons with developmental disabilities have high rates of psychiatric problems.

When assessing maladaptive behaviors, it is important to evaluate and treat the cause rather than merely suppress the behavior.


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  7. Maladaptive behavior is often a manifestation of a medical or environmental problem, and is an opportunity to improve communication or to provide a better way to make sure the patient's needs are being met. When interpreting behavior, it is important to consider the patient's ability to respond to potential mis-treatment or abuse.

    Some persons with developmental disabilities have had extensive educational and therapeutic interventions focused on improving their compliance with the expectations of authority figures such as parents and teachers. Persons with developmental disabilities who have been taught to comply, especially those who need assistance with activities of daily living, may not have been encouraged or taught to set personal boundaries or to recognize or communicate when they are being mistreated or abused.

    These patients may be particularly vulnerable. Supported decision-making principles are particularly important when patients are facing a life-threatening illness. Terminal illness does not have to lead to a loss of autonomy, dignity, relationships, housing, or self-determination. Persons with developmental disabilities typically report higher quality of life than is perceived by others who are not disabled. Family physicians are important advocates for their patients to access a full range of life-sustaining, curative, palliative care, and hospice services.

    TRANSCEND Research Laboratory, Martha Herbert, MD, PhD - Massachusetts General Hospital, Boston, MA

    This article updates a previous article on this topic by Prater and Zylstra. Data Sources: A PubMed search was completed in Clinical Queries using the key terms supported decision making and developmental disability. The search included systematic reviews, randomized controlled trials, and clinical trials. Search date: January 4, Already a member or subscriber? Log in. Kripke ucsf. Reprints are not available from the author. Accessed August 22, Coppus AM.

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    Treating Neurodevelopmental Disabilities: Clinical Research and Practice

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