Caregiver Guidance
Information and tools for getting support, advocating and staying organized.
mental health
Don’t miss the signs and symptoms of anxiety and depression.
About 70% of autistic people suffer from some form of anxiety, which can occur at any age. Anxiety disorders can include generalized anxiety disorder, panic disorder, social anxiety disorder, and phobia-related disorders. Autistic people are four times more likely to experience depression during their lifetime than the general population. Signs and symptoms of anxiety and depression in both neurotypical and autistic patients include:
Feeling nervous, restless or tense
Having a sense of impending danger, panic or doom
Having an increased heart rate (tachycardia)
Breathing rapidly (hyperventilation)
Sweating
Trembling
Feeling weak or tired
Trouble concentrating or thinking about anything other than the present worry
Having trouble sleeping
Experiencing gastrointestinal (GI) problems
Having difficulty controlling worry
Having the urge to avoid things that trigger anxiety
Feelings of sadness, tearfulness, emptiness or hopelessness
Angry outbursts, irritability or frustration, even over small matters
Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports
Sleep disturbances, including insomnia or sleeping too much
Tiredness and lack of energy, so even small tasks take extra effort
Reduced appetite and weight loss or increased cravings for food and weight gain
Anxiety, agitation or restlessness
While anxiety in autistic individuals is frequently heightened by change, especially changes in routine or anticipation of new situations or expectations, the symptoms often present differently than in neurotypical patients. Sometimes anxiety that is expressed through behavior changes in autistic adults is attributed to other factors or grouped with “typical” autistic symptoms. Anxiety in patients with more severe language and cognitive impairments can be even harder to distinguish.
Some of the common manifestations of anxiety in autistic adults can include:
Social awkwardness and reluctance to engage in relationships or group activities
Perseverating on small worries, often manifested by repetitive questioning
Increases in stereotypy or repetitive behaviors (stimming)
Excessive adherence to rituals or routines
Negative thoughts, especially in children and young adults
Skin and/or nail picking
Pacing, escaping or running away
Meltdowns or tantrums
Depression can present in some more typical ways, such as excessive sleeping, loss of interest in preferred activities, and poor attention to self-care.
Autistic adults and caregivers should be aware of signs and symptoms of anxiety and depression and report them to their PCP and/or mental health provider. Because behaviors that appear to be anxiety-related can also be symptoms of various medical conditions it’s important to be proactive so that both the source of the anxiety and its underlying cause can be identified, whenever possible.
Drs. Chris McDougle and Robyn Thom are psychiatrists who specialize in treating autistic patients. They offer advice on recognizing depression in autistic adolescents in a Harvard Health article, “How can you support your teenager with autism spectrum disorder if they are depressed?”, and the suggestions they offer can also be applied to adults.
Self-advocates and autistic people who feel comfortable sharing their feelings can benefit from talk therapy. It’s important to consider the best strategy for understanding and treating anxiety or depression according to the needs of the autistic person. Some approaches to treating anxiety and depression include cognitive behavioral therapy (CBT), mindfulness therapy, dialectic behavioral therapy (DBT), and neurofeedback.
Medication and autism is a complex topic. Prescription, over the counter, and complementary medications don’t always work for all patients and side effects can affect long-term health. Clinicians who treat autistic patients often find that medications and dosages that work well for neurotypical patients are less effective for those with autism. It’s important to discuss medication strategies with the PCP or any prescribing clinician to ensure that any psychotropic medications are tailored specifically to the unique needs of the autistic patient.
For example, Selective Serotonin Reuptake Inhibitors (SSRIs) are often used as a first line medication for anxiety in neurotypical patients. However, some experts in the autism field caution against their use in autistic patients, especially children and adolescents. Buspirone and mirtazapine in very small doses to start have been shown to help anxiety, with slow and steady dosing up to a typical amount.
Harvard Medical School’s free Clinician Course for medical providers, Clinical Care for Autistic Adults, provides clear and extensive advice to medical providers about best practices for treating autistic adults, including specific guidelines for medication.
Another useful resource is the Parent’s Medication Guide from the American Psychiatric Association
Any language or behavior that presents a risk of serious self-harm or suicide should be reported immediately to a mental health professional or PCP. They can offer instructions about the best way to access emergency mental health services to get immediate attention.
The Suicide Hotline can be reached by calling or texting 988 from any phone. They have resources specifically designed to meet the needs of neurodiverse and autistic people:
Warning signs of suicide for autistic people
Crisis supports for the autistic community
Spark for Autism explores the risk of suicide in autistic people.
ECHO Autism has a directory for finding clinicians trained in best practices for treating autistic children and adults.
Psychology Today has an excellent directory for finding therapists, many of whom provide autism-competent care.
The AASPIRE Toolkit is a good resource that can help patients find an adult provider who understands autism-competent care.
Pennsylvania’s Autism Services, Education, Resources and Training Collaborative (ASERT) has a resource, “Be Well, Think Well”, with tools that self-advocates and caregivers can use to help with anxiety.
The National Alliance on Mental Illness (NAMI) offers help finding mental health providers and offers links to support groups.
The Substance Abuse and Mental Health Services Administration offers 24-hour referral and support.
SAMHSA's National Helpline800-662-HELP (4357) TTY: 800-487-4889
Find more information on common conditions and how to address them
Information and tools for getting support, advocating and staying organized.
Tools and advice for getting autism-competent care.
Get expert advice on the health issues common in autistic people.