When Autism and Mental Health Issues Collide
First in a series of articles on mental health.
John was fuming. He hoisted the 75-pound cement planter, then dropped it with incredible force. As he shattered the bluestone on his family's porch, he also crushed Julie Froehlich Tracy's hopes that her son's aggression would just go away with time.
John had the hallmarks of high-functioning autism as a child. He had poor motor skills, sensory issues, and unusual mannerisms. Yet he was very bright and talkative. He shared his toys with others as a child. He took good care of animals as a member of his local 4-H program.
As he hit puberty, though, he had trouble maintaining friendships. Ongoing bullying caused him to become withdrawn. Anxiety medication did not help much. Then the mood changes began.
He started violent arguments over trivial things. He lashed out often and left bruises all over his mother’s body. He was always remorseful afterwards, alarmed by his lack of self-control.
“I don’t know why I keep doing this,” he said after one violent outburst landed him in the hospital. “I have to quit doing this. I’m scared. I’m going to end up in jail.”
But what caused the volatility that sparked her once selfless child with autism to become dangerous in their home would take even longer for Tracy and her family to uncover.
John was formally diagnosed with autism in middle school. But it wasn’t until recently after years of emergency room visits, medication missteps, and police confrontations that the 20-year-old received an additional diagnosis of bipolar disorder.
“A mood disorder was developing, but we had never thought of mental illness,” Tracy said. “We just thought John’s autism was getting worse. But he was becoming psychotic.”
Looking Beyond Autism
What the Tracy family experienced on the road to diagnosis points to a growing challenge in the autism community: A number of people with autism also have some form of mental illness and the illness can go inadvertently untreated if believed to be just another characteristic of autism.
Indeed, studies within the past 15 years have shown about 70 percent of people with autism spectrum disorders may meet criteria for what are known as comorbid mental health disorders described in psychiatry’s diagnostic manual, the DSM-IV. (This percentage may change when the DSM-5 comes out in 2013.) One 2011 study from the University of Gothenburg in Sweden found about 70 percent of young adults with Asperger syndrome had experienced at least one episode of depression.
Part of the reason it is so hard to separate out mental illnesses from autism is that autism is still not fully understood and looks different in each person.
“We have so much more to learn about the parameters of autism, it’s hard to know at what point a person should receive an additional diagnosis,” said Dr. Ken Duckworth, medical director at the National Alliance on Mental Illness. “But there are people who have all of the symptoms of a mental illness in addition to the autism that warrant additional diagnoses.”
Onset of mental health disorders also often occurs at the same time young adults experience rapid developmental changes and increased social pressures, said Beth Yurman, a licensed psychologist at Spectrum Services in New York City. This can lead parents to think some of their youth’s issues are just part of growing up with autism rather than a separate challenge warranting intervention.
A student with autism may start to stick out among his middle school peers for his lack of social graces, for example, and become the brunt of bullying, Yurman said. This can start the student on a downward spiral of feeling frustrated, hopeless, overwhelmed, anxious or angry.
Bullying prompted Tracy’s son to withdraw after years of being the quirky, funny younger brother of a popular track and football athlete.
“School started to become a very significant stressor in John’s life and he became very angry and irritable,” Tracy said. “We thought it was just adolescence and that we would get through it. But we were really seeing cycles of rage in a person who was becoming severely mentally ill.”
The mood changes Tracy witnessed occurred without much warning or a clear trigger.
“It was so tricky,” she said. “Sometimes he seemed so good. Then we would be sitting at the dining room table and he would just explode.”
Abrupt changes in behavioral patterns without substantive situational changes are often red flags of mental illness, Duckworth said.
“Clinicians are reluctant to give additional diagnoses because people with autism can have some trouble regulating their moods,” he said. “But if a pattern of mood changes emerges and it is unrelated to environmental changes, such as a family move, I would wonder if there were also mental illness.” It is important to recognize that those with lower cognitive functioning are likely to exhibit ongoing problems with aggression that would not be related to bipolar disorder, Duckworth added.
“In people with and without autism, bipolar disorder also has an element of periodicity to it,” he said. “If a person is frustrated or aggressive on a regular basis, he would not fit the profile of a person with an independent bipolar diagnosis.”
The DSM-IV precludes clinicians from diagnosing some comorbid conditions in people with autism spectrum disorders. But that doesn’t mean you shouldn’t discuss these issues with a doctor if you believe they merit intervention beyond what may come with an autism diagnosis.
This is particularly important if you have a family history of mental illness. A 2008 small Japanese study found that 37.5 percent of individuals with autism and a mood disorder had a family history of mood disorders. Tracy said there is schizophrenia and bipolar disorder in her husband’s family background.
Note how these mental health issues may show up in young adults with autism:
- Anxiety disorders: Youths with autism who have additional anxiety issues, such as social anxiety disorder or obsessive compulsive disorder, may withdraw more than usual from others and shy away from activities that may cause concern rather than put themselves into a situation in which they may fail, Yurman said. They may show increased behavioral inflexibility and retreat even further into their restrictive interests. “Someone with OCD who does not have autism typically won’t want to have the intrusive thoughts that compel him to engage in those behaviors,” she said. “But someone with autism may be soothed by them.”
- Depression: Young adults with autism who develop depression may also show an increased lack of motivation to interact with others, said Nick Garcia, a licensed psychologist at California Spectrum Services in Bakersfield. They may pull away from others because they are tired of trying to conform to social norms they don’t understand and of being humiliated. “They can become despondent because they cannot connect with others,” Garcia said. “They lack self-awareness, though, so they may cry and not understand why they are crying. They may not be able to explain why they are upset.” They may become less interested in their favorite activities, but show an increase in repetitive behaviors. They may also exhibit self-injurious behaviors, especially if they have trouble communicating their needs. “You may see more anger, with someone hitting his head against the wall, as opposed to sadness,” he said.
- ADHD: Young adults with autism who have ADHD may show high distractibility and seem extremely disorganized, Yurman said. They may exhibit inattention that is unrelated to the overstimulation they may experience with autism. “They can also be very forgetful,” she said. “I know college students who can’t remember what their professors said in class. Or they say, ‘My roommate is really annoyed with me because I can’t stop fidgeting and it drives him nuts. But I’ve tried to stop and I can’t stop.’”
- Bipolar disorder and schizophrenia: As Tracy’s son experienced, young adults with autism and bipolar disorder may demonstrate cycling inflated and deflated moods unrelated to other life experiences, Duckworth said. They may have reduced tolerance for frustration. They may retreat further into their preferred interests. Young adults with bipolar disorder or schizophrenia may develop hallucinations, delusions and paranoid thoughts and engage in self-harm out of anger and exasperation because they cannot understand or explain what is happening to them.
After Tracy’s son was admitted to a city hospital’s psychiatric ward on a night he was particularly violent, he complained of seeing insects in his room.
“John said he saw ants on his toothbrush when he was at the hospital,” Tracy said. “We thought he was saying the place was unclean, but he was hallucinating and having a severe psychotic break.”
There are therapeutic approaches to addressing mental health issues in young adults with autism. The problem is these methods have little research behind them that takes an existing autism diagnosis into account. Many medications are also prescribed “off-label”—used in a manner other than what’s been approved by the Food and Drug Administration (FDA)—because of limitations in autism diagnosis and FDA approval. There is also a nagging disbelief among some members of the medical community that these challenges merit their own intervention independent of autism treatment.
“The big misconception is that symptoms of mental health disorders are just parts of a person’s autism,” Yurman said. “Some people think these issues are just a part of the disability that they cannot treat or change.”
But there are researchers and doctors who are turning their attention to how to better tease out autism symptoms from those of mental illness for treatment. In fact, psychologists Leslie Deprey and Sally Ozonoff write in "Assessment of Autism Spectrum Disorders" that "although differential diagnosis is difficult, it is essential, as treatment of the [autism] symptoms alone will usually not result in improvement in the other behavioral or emotional problems that exist. Undertreatment or partial treatment can result in significant functional impairment."
A combination of Cognitive Behavior Therapy (CBT) and medication can help many people with autism and mental health issues, Yurman said. This involves changing young adults’ patterns of behaving and thinking by making them aware of why such patterns are irrational and unproductive. Medications may alter mood and reduce impulsivity, among other functions.
But, as Tracy experienced with her son, it can take many years to uncover the appropriate treatment regimen.
John started out just taking the anxiety medication Risperdal, Tracy said. Then his doctor prescribed Abilify to address his increasing irritability. As he became increasingly aggressive, and his dangerous, destructive behavior warranted emergency room visits and stints in psychiatric wards, he received more intensive treatments. He had to go on a benzodiazepine drip at one point despite the risk of renal failure. “He had to be in four point restraints,” she said.
Even that treatment was not enough to help John, though, so his doctor suggested Electroconvulsive Therapy (ECT). ECT, which involves stimulating a brief seizure by passing mild electrical currents through the brain, has been demonstrated to be effective as treatment in severe mental illness, especially when other interventions have proven unsuccessful. However, ECT has been stigmatized by a history of abuse and the popular image of “shock therapy,” a situation some researchers feel interferes with its use with patients who might benefit. Recent research into the use of ECT with autistic patients and patients with intellectual disability points to potential efficacy in the treatment of severe conditions. As with any medical intervention, the use of ECT should be discussed thoroughly with a knowledgeable medical practitioner.
The ECT was followed with the mood stabilizer Lithium and Clozaril, which is a last-resort antipsychotic often prescribed for people with schizophrenia. ECT and the combination of drugs finally made a difference.
“The doctors were trying so hard to take care of him,” Tracy said. “They had tried everything else. The effect was almost immediate after starting the course of ECT. It was dramatic. He now has much of his gentle, kind, thoughtful personality back.”
John now lives in a residential therapeutic program and spends some weekends at home. He recently enjoyed time with his cousins at a wedding. Tracy is in the process of establishing a nonprofit program that would allow John and other young adults with autism and mental health issues in their 20s and 30s to live in a supported setting while participating in their community.
“We want to help John and others find some kind of independence,” Tracy said.
The pursuit of some form of psychiatric treatment for a young adult with autism and symptoms of mental illness is imperative, Duckworth said. Many of these mental health disorders, including bipolar disorder and schizophrenia, emerge in youths ages 18-25. Young adults with autism, therefore, may already be attending college or working in their communities when they show clear signs of additional mental illness, he said. Others may show signs when they are younger, as Tracy’s son did, but not get adequate or appropriate treatment.
Without proper treatment, mental health issues can escalate and lead to injury of the individual and others around him. Indeed a college student with autism was reportedly shot dead on recently by police officers who responded to a 9-1-1 call placed by the 20-year-old's grandmother. She reportedly told the dispatcher he was depressed and suicidal; she wanted an ambulance to take him to a hospital. But police officers with guns arrived instead.
Tracy hopes others will learn from her experience and investigate emerging mental illness early before anyone gets hurt.
“I don’t know what the future holds for John, but I am glad he is alive, I am alive, and he is becoming more stable with the right combination of medication and psychological support,” she said. “Others should not be fooled into thinking these things pass. They can get worse and worse without treatment.”
If you suspect you or a young adult you know may have a mental health disorder in addition to autism, be sure to seek the advice of more than your primary care physician. “A psychiatrist [in addition to a primary care provider] should be involved in determining treatment,” Duckworth said. “Individuals with autism, their parents, schools, and communities do not have to do it alone. You need to have a comprehensive team working together.”
Next: Mental Health Concerns in College Support Programs for Students with Autism