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Autism and Depression: What You Need to Know

Depression may look different in Autistic children. Here's what you need to know.

Autism and Depression: What You Need to Know

I received a call from the parent of an eleven-year-old autistic boy last week. “I think my child is depressed. He’s stopped showing any interest in activities he used to enjoy. But he can’t speak or explain to me how he feels!”    

Diagnosing and treating depression in autistic children can be complicated.

What is depression?

The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders is widely used by healthcare providers to diagnose mental health disorders. 

According to the manual, depression is diagnosed when five or more of the following symptoms are present for at least two consecutive weeks and represent a major change in daily functioning, causing significant distress and impairment nearly every day:

  • Depressed mood, sadness 
  • Markedly diminished interest or pleasure in almost all activities 
  • Significant weight loss or weight gain, with changes in eating patterns and habits
  • Insomnia or hypersomnia 
  • Psychomotor agitation or impairment
  • Fatigue, feeling burnt out, loss of energy 
  • Feelings of worthlessness, unimportance or excessive and inappropriate guilt
  • Diminished ability to think, process information, concentrate or make decisions

There can also be physical symptoms, such as stomach aches, joint pain and headaches. Emotional meltdowns and an increased aversion to certain sounds, textures and smells are common, too.

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Depression is classified as Mild, Moderate or Severe, depending on the level of impairment in daily functioning.

Diagnosing depression in autistic children

Dr. Christopher McDougle, the internationally respected neuropsychopharmacologist and Director of Massachusetts General Hospital’s Lurie Center for Autism, confirms that depression can be challenging to diagnose in autistic children. It can be particularly challenging for those who are non-speaking, minimally speaking or have difficulty identifying and expressing how they are feeling. Depression can sometimes look like laziness or a lack of motivation and can come across as anger or irritability. 

While neurotypical children often respond to the question, “How do you feel?” with words like “depressed”, “sad” or “helpless”, he says that many autistic children have difficulty identifying their emotions and instead use words like “tired” or “hungry”. 

Studies estimate that approximately 11 percent of autistic children, versus five percent of non-autistic children, have co-occurring depression and that the incidence of depression increases with age. Depression is also reported to be more prevalent amongst autistic girls than boys. More studies are needed, however, to confirm the efficacy of these statistics and statements.

Mental health concerns like depression can look different in autistic children. Seemingly similar, overlapping symptoms may actually stem more from autism than from depression, leading some clinicians to miss behaviours or dismiss parental concerns. These might include:

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  • Flat affect/facial expression
  • Decreased appetite
  • Sleep problems
  • Lower energy and motivation
  • Withdrawal from social activities and interaction
  • Decreased desire to communicate

Dr. McDougle comments that many clinicians are hesitant to diagnose depression in autistic children due to the lack of evidence-based data. There are several assessment tools used to diagnose depression, such as the Revised Children’s Anxiety and Depression Scale and the Mood and Feelings Questionnaire, but he believes they have their limitations.

What’s the best way to diagnose depression in autistic children then?

Parents and caregivers play a critical role in helping diagnosticians determine if our autistic child is clinically depressed. Trust your gut: if a clinician is not willing to treat you as a core member of their team, go elsewhere!

Come to the clinician’s office armed with information. Dr. McDougle wants parents to empower themselves and tell the doctor why they believe their child is clinically depressed by bringing:

  • A checklist of the DSM-5-TR criteria for depression that the child exhibits; the fact that this list is objective gives it more credibility than subjective observations alone

  • A written list of recent changes in behaviour that deviate from your child’s usual, longer-term behaviours
  • Any family history of depression
  • Input from your child’s teachers and others involved in their care

Qualified clinicians will spend enough time with your child to get to know them and their baseline behaviours. They usually also conduct a physical exam to rule out conditions, such as hypothyroidism, that can look similar to depression. 

It’s best when both parents agree with one another and attend the appointment with the clinician. If you don’t feel confident, bring a trusted family member, friend or ally – who might even be another healthcare provider – to act as your voice.

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How is depression in autistic children treated?

Dr. McDougle explains that autistic children with depression are usually treated with a combination of cognitive behaviour therapy and/or medications.

Cognitive behaviour therapy often needs to be modified for autistic children, particularly those with higher support needs. As with other co-occurring conditions, significant progress can be made with supports and accommodations such as simplifying and chunking language to ensure your child understands instructions and expectations, using visual supports like gestures, pictures or social stories, and providing more frequent breaks.

To date, there have not been any published double-blind, placebo-controlled studies of any medication for the treatment of depression in autistic individuals. Serotonin selective reuptake inhibitors (SSRIs) are the first-line medication treatment for neurotypical children with depression, with some SSRIs approved by the Food and Drug Administration for this purpose.

Yet many autistic children have difficulty tolerating SSRIs, experiencing behaviour escalation, irritability and hyperactivity. Dr. McDougle stresses the importance of always beginning at a low dosage and gradually adjusting over an extended period. He has had the most success with a related class of medications, serotonin and norepinephrine reuptake inhibitors (SNRIs) such as Duloxetine (Cymbalta), that are often effective in treating depression. 

Dr. McDougle is excited that we are on the cusp of discovering so much more about co-occurring autism and depression. This new frontier is positioned to significantly benefit many of our autistic children and their families. 

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We should all look forward to learning from leaders like Dr. McDougle for greater understanding and knowledge in the not-too-distant future.  

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Jan Stewart is a highly regarded mental health and neurodiversity advocate. Her brutally honest memoir Hold on Tight: A Parent’s Journey Raising Children with Mental Illness describes her emotional roller coaster story parenting two children with multiple mental health and neurodevelopmental disorders. Her mission is to inspire and empower parents to persevere through the most difficult of times and have hope, as well as to better educate their families, friends, health care professionals, educators and employers. Jan chairs the Board of Directors at Kerry’s Place Autism Services, Canada’s largest autism services provider, and was previously Vice Chair at the Centre for Addiction and Mental Health. She spent most of her career as a senior Partner with the global executive search firm Egon Zehnder. Jan is a Diamond Life Master in bridge and enjoys fitness, genealogy and dance.

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