Mental Health for Kids with Disabilities 101
Coping with the stressors and challenges of life is tough, especially when you’re a kid — and with added complications when you also have a developmental disability. Our kids face many unique stressors, from extra therapies at school to feeling misunderstood by friends or family, on top of the challenges of just being a kid in the world. Sometimes, big emotions like sadness or anxiety can just be a part of their typical developmental phase, but they can also indicate a more serious problem. As parents, learning how to identify when our kids are struggling and knowing how to support them through uncomfortable emotions, or during a mental health crisis, is one of the most important ways we can support their well-being and development — and empower them to not only develop positive coping and self-advocacy skills but also to be kind to themselves and know when to ask for help.
We’ve put together these resources, with the help of various mental health professionals, to help support our kids’ emotional and mental health — from finding the right providers to supporting mental health at home and in crisis to getting school supports, and more!
Kids with disabilities and mental health
A vulnerable population
For a long time, and still today, mental health symptoms in kids with disabilities were overlooked, their emotional and mental health struggles often overshadowed and incorrectly assumed to be due to their disability rather than a mental health issue. Realistically, studies show that our kids are actually at an increased risk of mental health issues and are more susceptible to the risk factors for suicide, such as increased traumatic experiences, bullying, social isolation discrimination, and an inability to regulate and express their feelings. If our kids have a hard time expressing how they’re feeling, or can’t even recognize feelings of anxiety or depression or stress, it’s often the case that they will be mislabeled as having behavior issues or an inability to concentrate. This can lead to feelings of frustration and loneliness and continue the cycle of emotional dysregulation.
National data shows that students in special education are at high risk compared to their peers, especially if they have an emotional disturbance. For special education students, the suspension/expulsion rate for those with emotional disturbances was 32% compared to 16% for all other developmental disabilities. Mental health and learning disorders are also tied to higher dropout rates — the dropout rate for all students being 8.9% compared to 12.7% for students served under IDEA and 26.8% for the subset of students served under IDEA with emotional disturbance for the 2019-2020 school year.
It’s evident that our kids are a vulnerable population. Founder and clinical director of CARE-LA, Dr. Lauren Stutman, Psy.D., explains that there are “a number of studies that show it's not a question, they’re definitely a vulnerable population. There are a lot of reasons why. One is less access to mental health specialists that understand the lived experience. Another reason is being othered and being isolated. Social connection is such a protective factor for mental health. So that's an issue also with certain illnesses — there's chronic pain, or a change in diet, or there's missed school problems with schoolwork. So there are just so many more reasons why these kids are actually a vulnerable population.”
De-stigmatizing mental health
One thing we can do as parents is to challenge negative stereotypes and labels. We can do this by helping our kids understand their emotions and how they relate to their disabilities; how to advocate for themselves; as well as informing family, friends, teachers, and other school staff about their challenges and strengths. The stigma around mental health may be universal, but it can be challenged in many ways. The Brain Health Bootcamp, for example, uses the term “brain health” instead of “mental health” to emphasize that mental illness is like any other medical condition and it’s not from a weakness of character, which is something we may need to challenge in ourselves due to our own upbringing, culture, society, and the world at large. While we choose to use the term “mental health” in this article, we fully support the de-stigmatization of issues around mental health and hope that families can speak about it more openly and feel comfortable asking for help when they need it.
As Dr. Caitlin Solone, education advocate, teacher educator, and faculty at UCLA, explains in our article How to Talk About Disability, the goal is “supporting parents as they evolve their implicit biases around disability in healthy ways.” One way we can do that is by considering our relationship with the idea of “overcoming” disability, and learning how to see the whole child, including their disorders. Dr. Stutman explains more about overcoming the stigma of mental health below:
When a child has both a developmental disability and a mental health condition, these are called “co-occurring disorders.” Dr. Stutman tells us that kids with intellectual disability have a higher rate of depression and that kids with cerebral palsy often have a lot of anxiety. Other stats show that kids with specific learning disabilities overall have high rates of mental health issues.
When it comes to autism, close to 78% of children with autism have at least one mental health condition, with mood and anxiety disorders being more prevalent in girls with autism. Kids with ADHD are also up to three times more likely to have an anxiety disorder and five times more likely to have depression than kids who don’t have ADHD. Dr. Stutman explains that some kids, such as those with ADHD, may need extra care as having ADHD can put them at a higher risk of engaging in risky or dangerous behavior. While the statistics are enough to overwhelm any parent, there are also many resources to help us support our kids as they navigate their emotions and the struggles of being a kid. From creating positive coping strategies to modeling healthy behavior and emotional regulation, and more, we have great resources in our article Supporting Kids' Mental Health at Home and in Crisis.
Is it harder for some families to get these mental health diagnoses if their kids have disabilities?
Dr. Stutman tells us that having co-occuring conditions can create increased mental health obstacles. Emotional health, on its own, is important for our kids’ well-being at home and at school. But it’s not uncommon for our kids to face barriers when it comes to accessing mental health evaluations and treatment, whether that’s due to lack of awareness, provider inexperience or misconceptions, or general discrimination and stigma.
Dr. Emily Haranin, PhD, clinical psychologist at Children’s Hospital Los Angeles, explains, “One thing to know in general is that children with developmental disabilities or differences are at higher risk for experiencing co-occurring mental health conditions. Often, children with developmental disabilities are already experiencing stress related to functioning in a world designed for neurotypical individuals so it’s important to take concerns around mental health seriously. Parents should also be aware that it is not uncommon for mental health symptoms in children with developmental disabilities to be incorrectly attributed to the developmental disability rather than be recognized as a sign of mental health challenges – the term for this is ‘diagnostic overshadowing.’”
Kids with autism, for example, have a higher incidence of developing anxiety that can be overlooked because of bias. Dr. Stutman explains, “When kids have a disability, the doctors or the professionals tend to see the child through the lens of that disability.” For example, a child with autism or ADHD who also has anxiety may not get the diagnosis of anxiety because the doctors attribute the anxiety to the autism. Dr. Stutman also tells us some doctors “don't want to pile on the diagnoses for fear that it's going to overwhelm the parent or the child, but it's still important for the child's story and for their treatment.”
Identifying mental and emotional struggles
What are some causes of depression or anxiety in our kids?
There are many reasons why our kids may be struggling with their mental and emotional health. Dr. Stutman explains, “Anytime there's a major life transition, parents should be on more alert, to look for changes with their kids.” She gives us a few examples:
- if there is a family history of mental illness, such as depression, anxiety, or OCD
- during major life changes such as divorce, changing schools, a new sibling, a relationship breakup, family member that was living with them leaving or passing away, etc.
- being bullied or being ousted from their group
- parents not getting getting along with one another, fighting in front of them, or stonewalling each other
What are some of the signs and behaviors that parents should look out for mental health issues for their kids?
As a parent, you know your child better than anyone, so you will likely be the first to notice any changes in mood, temperament, or behavior in your child. Dr. Haranin tells us that, “There can be a wide array of signs and symptoms that may indicate concern for mental health conditions; however, one of the most important things to be aware of as a parent is that noticing a change in how your child functions and interacts with the world on a daily basis can be a warning sign.” She and Dr. Stutman share some signs we can look for:
- isolation from friends and family
- changes in appetite (eating a lot or very little)
- changes in sleep (sleeping too much or not enough)
- changes with friendships (not wanting to see friends)
- changes in grades (not doing their homework, failing classes)
- changes in mood (being weepy, withdrawn, or irritable)
- risky behaviors (self-harming, expressing suicidal thoughts, running away, etc.)
- increased irritability
- loss of interest in activities they enjoy
- avoidance of things, people, or activities
Dr. Matt Biel, chief of child and adolescent psychiatry at Georgetown University Medical Center, adds, “Don't assume what your kids are anxious about. They may be anxious about what you're anxious about. They may not, so it's worth asking and finding out. It's also worth looking for other manifestations of anxiety. Oftentimes for kids who have OCD or anxiety, what looks like anger or irritability is actually anxiety. So if kids are tantruming more and melting down more, grumpy, it may be because there's a lot of anxiety sort of percolating below the surface. So inquire about that.”
What about younger children? Mental health affects kids of all ages, but age can be a factor in identifying symptoms and addressing them. It may be more difficult to identify the signs in younger children because children are constantly moving through changes in development, and they may not be able to explain how they feel or why they are behaving a certain way. Your child's provider or mental health specialist may wait to make a diagnosis if your child is younger, or they may change or refine a diagnosis over time.
AAP states that about 16% of children under 6 years old have clinically significant mental health problems that require clinical care early in life. But early identification and treatment can promote healthy development. Age-appropriate screening and care should be explored; if you don’t know where to find the most appropriate services for your family, your child’s primary provider or pediatrician is a good place to start.
We have more information on addressing behaviors in our article Supporting Kids' Mental Health at Home and in Crisis.
Diagnosing mental health issues
Should parents seek a mental health diagnosis for their child?
There are many reasons to pursue a diagnosis, including unlocking services and opportunities that may otherwise be inaccessible. However, in some cases, parents may fear the stigma of a mental health diagnosis or be wary of yet another diagnosis on top of everything else. Dr. Stutman explains more in this clip:
Something that a diagnosis may do for your child is give them language to what they are feeling and help them feel like they aren’t alone. It can also create a whole picture of your child and help you, and them, to see them as a whole person.
Dr. Stutman says that having a diagnosis can help “because you're then part of an in-group on some level, and you can learn about your neuro type and you can understand yourself more deeply. For a lot of kids, what I do is I explain that they have what's called a ‘sticky brain.’ This type of brain is quite good at learning, it's like a sponge. However, the problem is that some things stick to it too well, so you get to give the information in a loving and healthy way. It’s really about the way that whoever is sharing the information shares it as I've had a lot of kids leave the office with a big smile on their face.”
When to see a mental health specialist or get an assessment
If you notice that your child’s mood, personality, or behavior seems to change suddenly, that’s when it’s time to talk to them, ask questions, and seek mental health services. They may not be able to express to you exactly what they are feeling or why they are engaging in these new behaviors. Maybe they’re not interested in school anymore, don’t want to hang out with their friends, stay in their room all day, or are irritable. Maybe they are engaging in risky behaviors, such as cutting. If they are non-speaking, they might be showing you signs by their behavior, such as acting out, wetting the bed, or suddenly changing a routine. Usually, what we want to look for is persistent and pervasive distress that interferes with normal functioning.
Dr. Biel shares why knowing your child’s communication style is important in recognizing when they feel stressed:
Usually, if your child is struggling with mental health, the earlier the treatment, the easier it will be for them to cope. But how can we tell the difference between serious behaviors and emotions that are a normal part of growing up? Sometimes, people will tell you that it’s “just a stage,” but you know your child better than anyone. Some things are just a stage, but some things aren't — it’s important to know the difference. If you think your child is struggling, it never hurts to talk to someone. Intervening early can be a protective factor for more serious issues, including suicide.
Some behaviors require immediate attention, such as suicidal ideation, cutting, and even eating disorders — anything that is self-harming. Other changes in mood can be due to life changes, such as a new school or a loss of a friend. These feelings may pass over time, but it ultimately depends on your child’s ability to cope with the changes.
(Learn more about warning signs on NIMH’s Child and Adolescent Mental Health webpage.)
In low-risk situations, you may decide to monitor their symptoms and see if anything changes over time. The criteria for many child and adolescent psychiatric disorders do require symptoms to be present for at least a period of weeks or months, so it’s important to watch and monitor what is happening. During this time, you can read and educate yourself on the signs and symptoms of depression and anxiety in kids, and start making a plan of who to contact if things escalate. Make sure you have a support team of people you can trust and talk to, such as a partner, parents, and friends. You can also start speaking to your child about what’s happening.
Biases in diagnosing mental health in kids with disabilities
The crossover between mental health and developmental disabilities has been few and far between. This often creates silos of information, leading to bias in assessment and diagnosis. There is a need to “bridge these two systems and the different sets of providers that tend to treat these children,” one study states.
In our conversation with Dr. Stutman, she mentions that there are a lot of differences when it comes to diagnosis, especially between girls and boys with autism. Girls are less likely to be diagnosed with autism as boys, and their symptoms can often be diagnosed as a mental health or mood disorder. One study, for example, showed that 77% of females with autism had received at least one psychiatric diagnosis, as compared with 62% of males with autism. Other research shows that “autism in girls can be misdiagnosed as borderline personality disorder, leading to mistreatment and unnecessary harm.” Dr. Stutman tells us, “Sometimes, what is seen as a difficult personality is actually a manifestation of undiagnosed autism.” She adds that the fixed interests of girls with autism “tend to be things that are more socially acceptable, like horses, cats, Harry Potter, and things of that nature. So it goes under the radar.” She continues, “People are starting to get on board with how to identify girls. I think the tests have been skewed for the boys to get the diagnosis because, in our society, we teach girls to be more considerate of other people. So what happens is they are able to mask and because of that, they might not receive the diagnosis.”
Bias also is present when it comes to race. Dr. Stuman tells us that “young Black boys are diagnosed with higher rates of schizophrenia, whereas their White counterparts might get ADHD.” In one national study, Black and Latino children were 69% and 50% less likely to receive a diagnosis of ADHD compared to White children. According to ADDItude Magazine, “When teachers see ADHD behaviors — particularly those involving impulse control — without attributing them to a neurological cause, they often interpret them as defiance.” In this situation, instead of going straight into developing something like a behavior intervention plan, you can ask for a closer assessment of your child’s mental health.
Other things like language barriers, culture, and socio-economic status can affect diagnosis. One study suggests that there are explicit and implicit stereotypes and bias in providers, meaning identical behavior displayed by Black and White children may be interpreted differently “based on race-based expectations for the behavior of children, and thus, behavior that is identified as disordered in white children might be inappropriately interpreted as normal in Black children.” Other reports show that practitioners are more responsive to white and English-speaking families, and that minority families feel practitioners can be dismissive of their concerns for their child. Treatment outcomes are also very similar, with racial and ethnic minority kids facing greater risks for developing anxiety and depression as they are less likely to receive mental health services for these conditions.
But there is hope. There are shifts in recognizing the importance of understanding, identifying, and treating mental health conditions in our kids. For us as parents, this includes educating ourselves and others, deconstructing stigmas and stereotypes, advocating for better tools for diagnosis, and seeing providers and specialists who are invested in our kids’ well-being.
Dr. Haranin also tells us that, “It is important for parents to know that they are the experts in their child, and to trust their intuition. If parents have concerns and feel like their concerns aren’t being taken seriously, they can ask to see a different provider, obtain a second opinion, or ask for a referral to a specialist. Often when parents connect with other parents, they realize that they are not alone in encountering similar barriers, so I also recommend that parents look to connect with other parents or parent groups. This could be online or in their local community. Other parents often have the best suggestions and strategies for successfully navigating complex service systems.”
For more information on mental health treatment options, read our article Mental Health Treatment Options for Children and Teens with Disabilities.
Building your mental health team
Getting a specialist experienced in caring for kids with disabilities
It’s hard enough accessing care and services for our kids, but with mental health, things can feel a lot harder. We may feel that our providers don’t understand our kids, are biased, and aren’t neurodiverse-affirming. One of the most important aspects of getting help for your child is getting help from the right people. Dr. Stutman explains why:
What are the most important questions that we should be asking our child's mental health care team?
Talking to providers may feel complicated and even intimidating, but we have some tips for how to approach talking to providers about mental health:
- Be honest with the symptoms and signs you are noticing. Tell them you are concerned and provide them with your notes and observations. Ask them if they’ve considered that your child has a mental health condition.
- Don’t be scared to advocate for your child and push for answers and evaluations. You can switch providers if the one you’re seeing doesn’t have experience working with children with disabilities.
- Ask them lots of questions, such as: Is there a diagnosis that fits for my child? Can you explain it in a way we can both understand? What are my child’s treatment options, and the benefits and risks of each? Which treatment can supplement my child’s developmental diagnosis? How are parents involved in treatment? How soon should treatment start? How long will it last? What other options are there?
- Ask your child’s primary provider for a referral to a mental health professional who has experience and expertise in treating mental health in children with developmental disabilities.
Dr. Stutman gives us a few more tips about building and communicating with our mental health team:
If your child is receiving private or school-provided care, it’s important that both parties stay in communication so that goals and treatment plans are aligned, especially when symptoms are present in many settings. Studies show that “for intervention to be effective, interagency involvement becomes critical when risk factors in a number of risk categories are involved.”
Treatment options for mental health issues in children
Progress can be in small steps
Dr. Stutman tells us that even though it’s hard, we as parents sometimes have to push our kids where they're not comfortable to see what's not working and adjust accordingly in small steps. It’s important to break things down into smaller steps and increments and allow them to catch up and work at their own pace. “We really need to understand that some of these things are just lapses in skill,” she explains. “It's always progress, but maybe not on the timeline that everybody says.”
Something we can do as parents is identify what progress looks like for our kids, emphasize the progress, and celebrate the wins. It might not look the same as a neurotypical child or a child without mental health issues. Maybe progress is identifying an emotion once a day, telling you when they’re feeling anxiety butterflies in their stomach and need a break, or reaching for a fidget toy. Dr. Stutman says, “I always feel like a really good analogy for kids and parents is that each one of these disorders and neurodiversities comes with bricks, and the more you have, the more bricks you have piled on. And you can't hold up all these bricks. How can you expect somebody who is holding 1,000 bricks to be completing the same race as someone who has two bricks? But the person who has 1,000 bricks, that can be their biggest blessing because they get to learn the tools that they need when they're young and put bricks down, whereas the person with the two or the ten bricks might go their whole lives holding ten bricks. So it's just a different way to look at it.”
Navigating emotions can also feel like a rollercoaster of ups and downs. In these moments, what our kids need from us is to be validated, seen, and heard for exactly where they are. Pediatric psychologist Dr. Rita Eichenstein explains how parents can approach the ups and downs of their kids' mental health:
Note for parents
If your child is exhibiting dangerous behavior and you need to intervene to stop an attempted suicide, or prevent one, call 911 or or your local emergency mental health access number, or take your child to the hospital. Here are some options for immediate support:
- Call the National Suicide Prevention Hotline at 800-854-7771, and find more resources on the DMH website. You can also use the the national suicide line by calling or texting ‘988’ or chat online on 988 Suicide & Crisis Lifeline’s website (website for Deaf and hard of hearing here).
- Disaster Distress Helpline: Call or text 800‑985‑5990 for 24/7 support.
- Crisis Text Line: Text HOME to 741741 for 24/7 crisis support.
- California Suicide & Crisis Hotlines
- CalHOPE Peer-Run Warm Line: Call 833‑317‑HOPE (4673) 24/7 for non-emergency support specific to COVID-19 stressors.
- California Warm Peer Line: Call 855‑845‑7415 for 24/7 for non-emergency support to talk to a peer counselor with lived experience.
- California Youth Crisis Line: Youth ages 12-24 can call or text 800‑843‑5200
- TEEN LINE: Teens can talk to another teen by texting “TEEN” to 839863 from 6pm – 9pm, or call 800‑852‑8336 from 6pm – 10pm.
- National Suicide Prevention Deaf and Hard of Hearing Hotline: Access 24/7 video relay service by dialing 800‑273‑8255 (TTY 800‑799‑4889).
- If you have Medi-Cal, you can call the number on your membership card for mental health services. You can also call your local county mental health line. To find out what services are covered, call the Medi-Cal Managed Care and Mental Health Office of the Ombudsman at 888‑452‑8609. They are available Monday through Friday, 8 a.m. – 5 p.m.
- Parents, caregivers, children, and youth up to the age of 25 can receive support at the California Parent & Youth Helpline. Call or text 855‑427‑2736 to speak to caring and trained counselors. Live chatting is also available on their website.
- NAMI California has resources for family members supporting loved ones with mental health conditions. You can call their HelpLine at 800‑950‑NAMI to get information, resource referrals and support from 7 a.m. – 3 p.m.