The patient is a 3-year, 9-month-old Hispanic girl brought in for psychiatric evaluation by her mother at the insistence of the child’s pediatrician. She has a 2-year, 6-month-old brother who had recently been diagnosed with multiple developmental delays, and the increased scrutiny on the children in the family had prompted the mother to obtain a regular pediatrician for both children. There had been little contact with the medical community before that time.
At the initial interview, the mother minimized any behavioral symptoms in the patient and denied knowledge of what might have prompted the pediatrician to refer her child (see Sidebar 1). She admitted that the classification of her son had been extremely difficult to accept and became tearful when describing all of the difficulties she faced as a single mother attempting to cope with his problematic behavior and obtain services. When discussing the patient, the mother praised her as highly intelligent and meticulously organized.
Early Warning Signs of Autism
- Lack of eye contact
- Lack of shared interest
- Lack of emotional expression (such as smiling)
- Poor verbal communication (including babbling)
- Poor nonverbal communication (body language)
- Restrictive, repetitive interests or behaviors
The patient interacted very little with the interviewer despite multiple attempts to engage her with toys of her choosing. She eventually settled on a bin of magnetic plastic letters, which she lined up on the floor according to a system that was not clear to the observers.
When her younger brother attempted to touch the bin, the patient would make a high-pitched scream and begin banging her heels on the floor; she otherwise completely ignored him. When asked what shape she was holding, the patient was able to accurately recognize all 26 letters of the alphabet, although she never looked directly at the speaker to respond or acknowledge praise. She made very few other vocalizations during the session.
Close questioning revealed other unusual behaviors that had been present from a very early age. The patient would rarely call to her mother or express pleasure upon seeing her. She could follow some simple, repeated directions but would often not respond to her name being called, even in the same room. Her hearing appeared normal, as evidenced by her ability to hear her mother quietly putting toys away in a different part of the apartment. When this occurred, the patient would become extremely upset unless she was able to place the toys back exactly where she had previously placed them.
When upset, the patient’s face would become very red and she would begin to scream. If she was not given what she wanted, this would progress to banging her heels, then to violently flailing her entire body, and often slamming her head repeatedly against the wall. These tantrums could last for more than an hour, and she was very difficult to soothe with anything short of complete capitulation. When satisfied, the patient would bounce repeatedly in her chair or on the balls of her feet and bend her wrists as far as possible, curling her hands inward to almost touch her forearms.
Autism Spectrum Disorder
The diagnosis of autism spectrum disorder was made, and it was discussed with the patient’s mother. She listened intently and then insisted that her daughter was fine and that none of the symptoms we had observed or described interfered with daily functioning, despite the patient having been kicked out of two regular childcare centers. The mother stated that many people in her family had exhibited similar symptoms as children and had “grown out of it.” She refused to accept the diagnosis or referrals to special education programs that could provide behavioral therapy at little or no cost to the patient.
After spending more time listening to the mother’s concerns and hardships, further details emerged. She had been married in Spain and fled during her second pregnancy due to verbal and physical abuse by her husband. She had immigrated to the United States legally, but her husband had initiated legal proceedings to obtain custody of the children. Fear of losing her daughter and son had prevented her from taking her children to a pediatrician regularly and also caused her to be extremely cautious about accepting any diagnosis out of concern that she would somehow be blamed.
The diagnosis of her young son had thrown the mother’s plans for her new life into complete disarray. She was now devoted almost full-time to his care and treatment, to the exclusion of her own plans for a law degree and a career. She was terrified that a second child with a chronic diagnosis would permanently destroy her life and her family’s future, which she had worked very hard to protect. She would not listen to anyone who handed down what she considered “a death sentence.”
Ultimately, the mother’s cooperation was obtained after several individual sessions that worked to build trust and rapport between the therapist and the parent. She refused direct psychiatric treatment of her own on the grounds that her records could be subpoenaed by her husband, but she agreed to family sessions without her daughter present. She was adamant that her daughter not be placed on medications at any time, and her wishes in this matter were honored.
It was explained to the mother that the causes of autism spectrum disorder are not known, but do not appear to be the direct result of any intentional action or inaction on the part of the mother. It was also explained that there is no known cure for autism and that the core problems the patient was exhibiting would not generally improve with time alone.
Early recognition and treatment was critical to provide her daughter with the skills to live her life with as many advantages as possible (see Sidebar 2). Without treatment, the patient would fall further and further behind her peers as she got older, and her increasing size would make her tantrums physically more and more difficult to manage.
Points to Emphasize with the Parents of Children with Autism
- The cause is unknown, but it does not appear to be the direct result of any intentional action or inaction on the part of the parent.
- There is no known cure for autism Beware of treatments claiming to “cure” your child or that do not have a sound scientific basis.
- Early recognition and intervention is important. Obtain testing for your child if you notice warning signs, and seek treatment promptly.
The patient’s mother eventually agreed to full neuropsychological testing to help place the patient in an appropriate therapeutic setting, where she would receive behavioral therapy. The patient was discovered to have significant language delays (as expected) but a very high projected performance IQ. She was able to join a nursery for children with autism without mental retardation, and later transitioned into an inclusion classroom with neurotypical children.
At the mother’s request, the patient was eventually mainstreamed into a regular public school classroom and was able to tolerate the environment and even form some meaningful relationships with her peers using the skills that she had learned in therapy.
Family involvement is essential in addressing a chronic psychiatric condition such as autism. Parental advocacy is required even before the initial screening phase by a medical professional. When obtaining a history, symptom onset must have occurred before age 3 years for the diagnosis,1 which puts the primary caretaker in the most favorable position to recognize and call attention to atypical behaviors. When this system breaks down, finding and addressing the cause of this disturbance is an indispensable part of the treatment.
There is no single best treatment for children with autism. Many different forms of therapy are available,2 reflecting the wide range of functional impairment that is possible with the diagnosis. Although there is no consensus on which therapy is the most successful,3 substantial evidence exists to suggest that intensive and ongoing therapy started as early as possible can promote independence, improve intellectual performance, and decrease maladaptive behaviors.4
Medications cannot address the underlying impairments of autism, but they may be used to target specific symptoms such as severe aggressive behavior, irritability, and self-injury. For these symptoms, atypical antipsychotic agents such as risperidone and aripiprazole appear to be the most efficacious.5 Medications of some kind are used in approximately half of young patients6 with autism in the United States,7 but should only be applied in cases where benefits outweigh the risks of side effects.
In general, treatment is time-intensive, long term, and expensive.8 For the best results, the parent or primary caretaker must be fully involved and fully supported to ensure that their own needs are met. Special attention must be given in cases where resistance or denial in the parent may negatively impact the treatment of the child.
- American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 4th edn., text revision. Washington, DC: American Psychiatric Association; 2000.
- Myers SM, Johnson CP. Management of children with autism spectrum disorders. Pediatrics. 2007;120(5):1162–1182. doi:10.1542/peds.2007-2362 [CrossRef]
- Rogers SJ, Vismara LA. Evidence-based comprehensive treatments for early autism. J Clin Child Adolesc Psychol. 2008;37(1):8–38. doi:10.1080/15374410701817808 [CrossRef]
- Lord C, McGee JP, eds. Educating Children with Autism. Washington, DC: National Academy Press; 2001.
- Posey DJ, Stigler KA, Erickson CA, McDougle CJ. Antipsychotics in the treatment of autism. J Clin Invest. 2008;118(1):6–14. doi:10.1172/JCI32483 [CrossRef]
- Witwer A, Lecavalier L. Treatment incidence and patterns in children and adolescents with autism spectrum disorders. J Child Adolesc Psychopharmacol. 2005;15(4):671–681. doi:10.1089/cap.2005.15.671 [CrossRef]
- Aman MG, Lam KS, Van Bourgondien ME. Medication patterns in patients with autism: temporal, regional, and demographic influences. J Child Adolesc Psychopharmacol. 2005;15(1):116–126. doi:10.1089/cap.2005.15.116 [CrossRef]
- Ganz ML. The lifetime distribution of the incremental societal costs of autism. Arch Pediatr Adolesc Med. 2007;161(4):343–349. doi:10.1001/archpedi.161.4.343 [CrossRef]