Importance of Diagnosis at All Ages

Many parents assume that if a child hasn’t been diagnosed in early childhood, it’s too late to seek answers. In reality, children, teens, and even adults are diagnosed every day. While earlier identification often leads to earlier intervention, it’s never too late to gain a better understanding of your child’s needs. A diagnosis can provide answers, guide more effective interventions, unlock services and accommodations, and help children better understand themselves.

For more information on the benefits of a diagnosis for kids of all ages and the different things parents can expect along the way, we spoke to R. Scott Akins, DO, chief of developmental and behavioral pediatrics and director of clinical programs at the UC Davis MIND Institute; Ann Simun, PsyD, neuropsychologist at Simun Psychological Assessment Group; and Lorena Galvan, DO, FAAP, developmental-behavioral pediatrician at Children’s Hospital Los Angeles.

When people talk about getting a diagnosis, they may actually be referring to several different things. Some diagnoses are medical, some are genetic, and others might sound like diagnoses but are educational categories.

• A medical diagnosis identifies a condition based on a child’s signs, symptoms, and developmental profile and often explains or groups symptoms. For example, autism is diagnosed based on a pattern of characteristics and behaviors — it is symptomatically defined, meaning it describes what a child is experiencing but doesn’t necessarily identify why.
• A genetic diagnosis can sometimes provide an explanation for the underlying cause of a child’s differences. However, even children with the same genetic condition can have very different strengths, challenges, and long-term outcomes, so it doesn’t predict an exact prognosis.
• An educational evaluation for an IEP identifies disabilities that affect learning and determines whether a child qualifies for special education services. For example, an evaluation may identify a specific learning disability, such as dyslexia, to help determine what educational supports a student needs. These identifications are designed to determine the supports a child needs at school — they are not medical diagnoses.

The most important thing to remember is that each type of evaluation answers a different question. A medical diagnosis can help explain your child’s health or development, a genetic diagnosis may identify an underlying cause, and an educational evaluation determines what supports your child needs to succeed in school. Together, they provide a more complete picture of your child’s needs. In this article, we mainly focus on a medical diagnosis.

While a school evaluation can identify whether your child qualifies for special education services — for example, a school team may determine that a child’s evaluation findings are consistent with autism or ADHD and use that information to develop an IEP — Dr. Galvan recommends pursuing a medical evaluation even if your child has already been identified through the school system.

“If they do an IEP and the evaluation findings are consistent with autism or ADHD, I do recommend pursuing the medical piece as well, because you can then obtain the official diagnosis. It may not be that your child needs additional resources now, but potentially in the future, if your child does need resources, having that diagnosis already there can be helpful,” she says.

Dr. Akins says a medical diagnosis may also be important if your child needs services outside of school. For example, a medical diagnosis may be needed for:

• Insurance-covered therapies, such as applied behavior analysis (ABA) and, in some cases, speech therapy.
• Government services. Some public benefits programs, such as Regional Center in California, require medical reports that include a diagnosis. While many Regional Centers are becoming more accepting of educational evaluations, some still require a medical diagnosis or an evaluation from a developmental pediatrician or psychologist.
• Medical concerns such as sleep problems, feeding difficulties, anxiety, depression, or other health conditions that may affect your child’s development or behavior.

That said, not every child needs an extensive medical workup. For children with few medical concerns or co-occurring conditions, a school evaluation may provide most of the information needed to support their education. Dr. Akins recommends discussing the results with your child’s pediatrician, who can help determine whether a referral to a developmental pediatrician, child psychiatrist, neurologist, or other specialist would be beneficial based on your child’s individual needs.

The specialist your child sees often depends on their age, their needs, and the concerns that prompted the evaluation. Dr. Galvan explains that many concerns, such as ADHD, anxiety, or mood conditions, can often be evaluated and treated by a child’s pediatrician. However, when a child’s challenges are more complex or they are not making progress despite recommended supports, it may be time to seek a more specialized evaluation. Dr. Galvan adds that she recommends escalating to a specialist “if there’s no progress or if it’s just a more nuanced, complicated presentation.”

Dr. Akins explains that most children with developmental disabilities are evaluated by a developmental-behavioral pediatrician, a child psychologist, or, in some cases, a child psychiatrist. Children with motor-based disabilities, such as cerebral palsy, spina bifida, or muscular dystrophy, are often evaluated by child neurologists or physical medicine and rehabilitation (PM&R) specialists.

As part of the evaluation, providers look at how a child is developing compared to other children their age. Dr. Akins says, “The definition for a developmental disability is that you have to have developmental delay when you’re compared to same-age peers, and we look across multiple domains. Those are gross motor, fine motor, socialization, communication, and adaptive function. Some tests also explore receptive and expressive language.”

Those developmental domains help providers understand not only whether a child meets the criteria for a diagnosis, but also whether they qualify for services and supports (and it often varies based on what state you’re in).

The evaluation process also changes as children grow. Younger children can often receive a comprehensive developmental evaluation from a developmental-behavioral pediatrician, while older children may also need cognitive testing from a child psychologist.

“[Up to age five], you can be seen by a developmental-behavior pediatrician because they can do testing for autism, developmental testing, adaptive testing, and some basic cognitive testing up to that age group. After that age, if you need a full cognitive measure, you have to go to a child psychologist. And so, oftentimes, a developmental pediatrician and a child psychologist will work together. Many families, if they do have intellectual disability or autism under consideration, have had full cognitive testing at school, and then a developmental pediatrician might see them to just do their autism assessment at any age,” Dr. Akins explains.

Receiving a diagnosis can feel overwhelming, but it can also be an important turning point. Beyond providing answers, a diagnosis may help families access services, identify the right interventions, and give children and teens a better understanding of themselves. Our experts explain more about why a diagnosis can be so valuable.

The right diagnosis leads to the right intervention

A diagnosis is not just about identifying a label — it’s about understanding why a child is struggling so that families and schools can provide the right support. Dr. Simun explains that different causes for the same challenge, such as reading difficulties, can require very different interventions.

Dr. Simun explains that identifying the underlying cause of a child’s challenges allows interventions to become more targeted over time. “The way that we use a medical model in the United States means that the research is done generally on the diagnosis and then the intervention and whether it works. We know that there are specific programs that work better for poor readers who have Down syndrome, and those programs don’t work as well for kids with phonological dyslexia. We know that children who have autism and hyperlexia don’t need an Orton-Gillingham approach for phonics for their reading delay; their reading comprehension is the problem, and they benefit more from an imagery-based comprehension approach because their visual system is strong. And so we know that learning about why you’re not reading does lead to a better outcome in terms of identifying the intervention.”

A thorough evaluation can help identify a child’s specific needs, prevent misunderstandings, and help children build self-advocacy skills and confidence. “If you don’t have a proper assessment, you don’t know [which intervention is needed],” she says.

Dr. Simun’s tips for parents of older children:

• A later diagnosis can still make a difference. Even if a child is identified in fourth grade, fifth grade, or beyond, understanding the reason behind their struggles can help guide more targeted interventions.
• Look for the “why” behind the challenge. A reading difficulty caused by dyslexia, ADHD, autism, or another learning difference may require different supports, so identifying the underlying need is key to getting the right accommodations and external supports.
• Help your child build self-advocacy skills. A diagnosis can help children understand their strengths and challenges, explain what supports they need, and avoid internalizing messages that they are “lazy” or “not trying.”

A diagnosis helps families access services and community supports

A diagnosis can help families understand their child’s unique needs while opening the door to important services, supports, and accommodations. Dr. Akins explains that a diagnosis can help children qualify for therapies, equipment, benefits, and other resources — but it can also help families better understand why their child experiences certain challenges and what supports may be most helpful.

Key takeaways for parents:

• One of the biggest reasons to seek a diagnosis is that it can help children qualify for important supports. As Dr. Akins explains, “You’re just not eligible for insurance-based services without it.” A diagnosis can help families access services such as speech therapy, feeding therapy, and other developmental supports, as well as equipment like wheelchairs, walkers, or shower chairs. It can also help families qualify for supports such as in-home support services, respite care, and Social Security disability benefits. “If you need speech therapy paid for by insurance to address one part of your language delay related to autism, you have to have a diagnosis that qualifies you.”

• A diagnosis can give families a framework for understanding their child’s strengths, challenges, behaviors, and experiences. It can help parents identify which areas may benefit from intervention, determine which differences may need accommodations, and understand how to support their child in a neuroaffirming way. “You can then work with a provider to say, ‘What type of supports for autistic individuals would be most helpful for my child?’ and then you can educate yourself and start to understand which of the challenges you’re facing are related to autism,” Dr. Akins says.

• For many families, a diagnosis can be an important step toward getting the support they need to care for their child. Dr. Akins notes that services such as respite care, in-home support services, and other benefits can help “raise your capacity to be available for your child” by providing additional support for the extra work that can come with raising a child with a disability.

A diagnosis can help kids and teens access support and understand themselves

A developmental disability diagnosis can open doors to important services and supports, but it can also help children and teens better understand who they are and how they experience the world. Dr. Galvan explains that a diagnosis can make it easier for families to access therapies and programs — including supports through state disability organizations like Regional Centers in California — while also providing children, families, educators, and peers with a clearer framework for understanding both challenges and strengths.

“Obtaining a diagnosis early on can really help with an individual’s understanding of their self and their dynamics between the family, their community, and their peers, their school. It can also help provide other individuals a framework for understanding what may be a particular child’s challenges and what may be their strengths, and then that can be really helpful in supporting them as they move forward through life.”

For families of young children, the path to a diagnosis can look different than it does for older children. In the early years, development is changing quickly, and it may take time for providers to understand a child’s unique strengths, challenges, and support needs. Early supports can help children build important skills, while also giving families and providers more information to guide the diagnostic process over time. Learn more about the benefits of early intervention in our article here.

Why diagnosing younger children can be more challenging

Dr. Galvan explains that diagnosing toddlers isn’t always straightforward because so many factors influence early development. “A lot of our diagnostic tools are based off of older children, and so younger children are more challenging because their brains are still developing, and there are so many factors that contribute to development — the family dynamics, community, if they had any recent birth or prenatal risk factors or experiences that may be contributing to their behavior. Because all of those factors play a role, plus you add on the fact that their brain is still growing, still developing, synapses are still happening, it can make the diagnosis much more challenging.”

Because of this and many other factors, experts recommend starting services before landing on a final diagnosis.

Don’t wait to start services while you’re waiting for answers

One of the biggest questions parents have is whether they should wait for a diagnosis before starting therapy. All three experts we spoke to agree that the answer is no. If your child is showing developmental delays, it’s important to begin services as soon as they’re available, even if the diagnosis isn’t completely clear yet.

Dr. Galvan explains that diagnosing very young children can be challenging because their brains are developing so rapidly. “Sometimes the diagnosis may not be as clear in certain children. Their brains are just so amazing. It may not be clear on the first visit, and so I typically recommend that we try to enroll in services first if there is a question of diagnosis. We go forward with services as we try to find the right diagnosis that fits. Unfortunately, in our medical landscape and educational landscape, having a diagnosis can really give you access to certain therapies and services. So if a diagnosis is able to be given right away, I would recommend we get the diagnosis right away, so then we can access those services as soon as possible."

Dr. Akins agrees that children shouldn’t have to wait for support while they wait for a comprehensive evaluation. “You can always start services as soon as you can, and then we can get to a definitive diagnosis if we need to. In the federal early intervention programs, the birth-to-three programs that exist in every state, the criteria is just developmental delay. You don’t have to have a diagnosis, and the reason for that is it’s hard to make a diagnosis at times in a two-year-old or an 18-month-old, and so we would want to start services.”

He explains that early therapies can make a meaningful difference while families wait for specialty appointments. “Getting high-quality speech therapy and physical therapy or occupational therapy, and even at times a couple hours a week of what they call at-risk ABA, a lot of times kids’ language will improve, their skills will improve, they’ll start to do some signs, they might start imitating — all the things that are really the basic building blocks for therapy and ABA anyway.”

He also points out that by the time a child is seen by a developmental specialist, those early therapy notes often provide valuable information. “If you’re 30 months of age when you get to see us in developmental pediatrics and you’ve been seeing a well-trained speech pathologist or an occupational therapist for the six months before, they’re often going to send us notes that really help us understand you. A lot of times parents have a better understanding. They’re just more prepared for a diagnosis, and that makes the whole interaction a lot more positive and hopeful because they’re aware that their child’s already starting to learn, and some of these therapies are already working.”

Don’t wait until they’re behind

While it’s important not to delay services while waiting for an evaluation, Dr. Simun says an accurate diagnosis still matters because it helps ensure children receive the interventions that are most likely to work for their specific needs. In many cases, she says, children who are struggling should begin evidence-based supports as early as possible, even before every question has been answered. Dr. Simun gives reading and dyslexia as an example when explaining why having services before a diagnosis is important in early intervention.

“In public schools, we often don’t have a choice of interventions. They’ll have a reading specialist. That reading specialist does this program, regardless of your diagnosis. So in that case, we probably would be better off if we simply screened all of the children in first grade, and if they were behind in reading, we did a structured literacy intervention on all of them. And then at the end of that year, if some of them are still behind, then we say, ‘Do these kids have dyslexia?’ But waiting until they’re failing in third grade, which is what we’re doing now, then giving all of them a minimal amount of intervention,” she says.

Does my child need to be reevaluated as they grow?

Experts say not necessarily. Most children don’t need routine comprehensive reevaluations simply because they’re getting older. Instead, reevaluation is recommended if new concerns arise or your child’s symptoms change.

Dr. Galvan explains, “There are certain diagnoses that may not require reevaluation, but if at any point in a child’s development, if there ever is a question of, ‘Is this really a diagnosis that does fit my child?’ I definitely recommend a reevaluation. But doing routine reevaluations is not necessarily recommended.”

Dr. Akins adds that reevaluation should be guided by changes in a child’s functioning rather than by age alone. He notes that providers regularly monitor for treatable conditions that commonly occur alongside developmental disabilities, including anxiety, ADHD, depression, feeding disorders, hearing and vision problems, and sleep disorders.

For children receiving special education services, he points out that schools are already reassessing their educational needs regularly. “If kids have an IEP, they’re getting triennial testing every three years anyway, and that’s really based on their overall performance in the school system, and that can be a very helpful guide to us to determine what else needs to be done. So we really do partner with the school psychologist and rely on the parents’ and caregivers’ input, but also the teachers’ input.”

Getting a diagnosis later in childhood or during the teen years can look different than it does for younger children. Let’s explore the nuances.

The diagnostic process may include input from parents, teachers, and the child

Dr. Akins explains that evaluations for older children and teens often include information from multiple sources, including questionnaires from caregivers, teachers, and adolescents themselves. This helps providers understand a child’s experiences across different environments and identify other factors that may be affecting them.

“There are two things we usually want input [on] beforehand: questionnaires from the caregivers at home, teachers if possible, and these are behavior rating scales that help us also see if there’s co-occurring anxiety or ADHD or other symptoms. And the teacher rating scales help us a lot with peer interactions that maybe the parents don’t see as often.”

For adolescents, providers may also include self-report questionnaires to better understand the child’s own perspective: “The other thing is we can get self-report questionnaires from adolescents a lot of times as well. Then we take all that information before the visit and get an assessment plan together,” he adds.

Dr. Akins also explains that the assessment itself is adapted based on a child’s age and communication abilities. For autism evaluations, providers may use different modules of the ADOS (Autism Diagnostic Observation Schedule), including a module designed specifically for older children and teens.

Dr. Galvan also explains that she involves children and teens in decisions about their diagnosis: “Before giving a diagnosis in either case, I do ask the child themselves — since it is their body, their medical chart — whether I have permission to provide that label and that diagnosis in their medical chart. So it is a conversation that I like to have with children or with teenagers before doing that.”

A diagnosis can help kids understand their challenges and protect their self-esteem

For older children and teens who have spent years struggling without understanding why certain things feel harder, a diagnosis can provide an important explanation. Dr. Simun explains that when children experience repeated school challenges without the right support, they may begin to internalize those struggles and believe negative messages about themselves.

“They might even be misdiagnosed as [having] attention deficit disorder or a behavior disorder, or even later an emotional disorder. I see it all the time that kids with unremediated ADHD or unremediated dyslexia later get identified with severe behavior and emotion disorders, just because they’re so frustrated, and they’ve had so much school failure, and they’ve had people tell them that they’re not trying when they’re trying, they’re doing their very best.”

She explains that over time, this frustration can affect a child’s confidence, motivation, and sense of self: “Eventually, they can become very frustrated. They can become helpless, and they can feel like, ‘Oh, what’s the point in trying anymore?’ They can start to dislike themselves or start calling themselves stupid.”

Talking openly about a diagnosis can help reduce shame

Dr. Simun recommends parents tell kids as soon as they find out the diagnosis. “Tell them as soon as you know, call it out. Tell them what it is. By the time you get it named, they already know that they’re struggling. They don’t know why, and they might be believing, ‘I’m dumb. I’m stupid. I’m lazy. I’m not trying. I don’t care. I’m not motivated.’ They’ll start believing that because they hear it around them.”

Ultimately, Dr. Simun says that giving children a name and a diagnosis for what they are experiencing can help them move away from self-blame and toward self-understanding. “Giving the kids . . . a name for what’s going on, so they stop saying it’s because I’m lazy, it’s because I’m dumb.”

Dr. Simun explains that she also makes a point of talking directly with older children about what their diagnosis means. For children around age 10 and older, she offers to meet with them individually after their assessment so she can explain their diagnosis in a way that makes sense for their age and understanding. She says these conversations can also help children recognize that a diagnosis does not limit what they can achieve. Instead, understanding their brain and their strengths can help them move forward with confidence.

Why it’s never too late to seek a diagnosis for your teen

While many children are diagnosed earlier in childhood, some teens — especially those with average to above-average cognitive abilities — may not receive a diagnosis until later. Dr. Akins explains that some teens may have developed strategies to compensate for their challenges or may have had their differences explained in other ways, such as being “shy” or simply struggling socially.

Key takeaways for parents:

• Many teens who are diagnosed later are looking for answers about why certain things feel harder for them. Dr. Akins explains that teens may begin researching their experiences and asking questions about their struggles with friendships, social situations, or feeling different from their peers. For many, receiving a diagnosis can bring a sense of relief because it helps explain their experiences. “It can be really helpful for teens . . . just to have an identity and know why things are a struggle,” he says.
• A diagnosis can help teens find a sense of identity and connect with others who share similar experiences. Dr. Akins explains that support groups and activity groups can give teens opportunities to build connections, talk through challenges, and learn from peers and professionals.
• A diagnosis can help teens learn strategies for daily life, such as when struggling with sensory overload, social situations, or transitions. “It’s nice to learn some tools so that you can manage those things, or even know, ‘I need a break,’ or ‘I don’t like to be in loud, noisy places,’ and that that’s okay,” he says. It can also help them access academic supports, including in college, and learn strategies for building connections in ways that work for them.

Why early identification can prevent years of struggle

Some parents may have concerns about the possible downsides of a diagnosis. While there may be a few situations where having a diagnosis can affect future opportunities, Dr. Simun emphasizes that those situations are limited. The much bigger concern, she says, is what can happen when a child’s struggles go unrecognized for years — including missed interventions, academic challenges, and the impact on a child’s confidence and self-esteem.

In this video, Dr. Simun explains why early identification of learning differences like dyslexia can make a significant difference — and why the right diagnosis matters when determining which interventions will actually help a child succeed.

Key takeaways for parents:

• Focus on getting the right support, not just avoiding a diagnosis. A diagnosis can help explain why a child is struggling and guide the interventions that are most likely to help.
• Look for the reason behind the struggle. A child who appears distracted, avoids work, or falls behind may be struggling with an underlying learning difference that has not yet been identified.
• Remember that understanding can protect confidence. When children know why something is difficult, they are less likely to blame themselves or believe they are lazy or not capable.

A diagnosis can be an important first step toward finding the right supports, but experts explain that it is also important to continue looking at the whole child and to reassess when progress is not happening.

Example 1: feeding challenges that were actually caused by medical issues

Dr. Akins explains that some children with autism and feeding difficulties may have an underlying medical condition that is mistaken for a disability-related feeding challenge. “I run a feeding clinic for kids with autism who were only eating five or six foods, and everybody attributed that to their autism, but they had significant underlying gastrointestinal problems like Crohn’s disease or ulcerative colitis or eosinophilic esophagitis. They were in feeding therapy and being given appetite stimulants. But actually, they were minimally verbal, and every time they ate, they were having pain, just like anybody else that had celiac disease or ulcerative colitis.”

Example 2: a sudden change in behavior that was actually pain

Dr. Akins explains that significant behavior changes — especially in children who have difficulty communicating their needs — may sometimes be a sign of an underlying medical issue rather than a change in the child’s disability. “Big changes in behavior in minimally [speaking] autistic folks, especially sometimes teens or it can be younger kids . . . will be evaluated and they’ll be prescribed behavior-modifying medications. Or they’ll have changes in their ABA or other treatments when what’s actually going on is pain or another kind of significant medical problem. Because in a minimally [speaking] child who also maybe has some interoceptive deficits, it’s really hard for them to localize pain and describe what’s happening.” Dr. Akins shares an example of young people whose aggressive behavior was ultimately linked to dental pain. “A 17- to 21-year-old is asked to leave their school program where they’ve always had great behaviors, or their adult day program where they’ve always had great behaviors, because they’ve had aggression happening multiple times a day, and it was their wisdom teeth. . . . Those are most often youths that struggled to get into the dentist and tolerate an exam, and certainly couldn’t tolerate X-rays, and so kind of quit going at one point.”

It’s not uncommon for parents and children to be in different places when it comes to a diagnosis. Some teens may identify strongly with a diagnosis before their parents are ready to accept it, while other children may feel uncomfortable with a diagnosis that their parents believe fits. Experts explain that these conversations require patience, understanding, and an opportunity for everyone involved to learn more.

When a child identifies with a diagnosis but a parent is unsure

Dr. Galvan explains that families may not always move through the diagnostic process at the same pace. In these situations, it can be helpful to understand what is behind a parent’s hesitation — whether it comes from concerns about the diagnosis itself, misunderstandings about disability, or fears about what the diagnosis means.

“It does happen often,” Dr. Galvan says. “I think it’s really important as a provider to meet families where they’re at, and people in the family may be at different points of the journey. And so it’s really important to meet each individual where they’re at and help provide them support in taking the next step forward. So in cases where it is the child that identifies as autistic, and it is a diagnosis that fits, and the parent may not quite agree with that diagnosis, it’s helpful to explore why. Asking, getting more information as to where the parent is at, what are they seeing, and what’s their understanding of disability and their understanding of the particular diagnosis.”

Dr. Galvan explains that this can also be an opportunity to support the teen in learning how to advocate for themselves and explain their disability to others.

“And sometimes it’s also providing counseling to the individual, to the teen, about learning to advocate for themselves and providing them with the tools necessary to be able to explain their disability to others, even . . . within your own family, at the dinner table with extended family members. And so it offers a great opportunity to begin to start developing those skills in those teenagers.”

When a parent feels the diagnosis fits but the child does not

Dr. Galvan explains that the opposite situation can happen as well: a parent may feel that a diagnosis fits, while a child does not identify with it. In those situations, she says it is important to explore the child’s understanding of disability and whether they have any preconceived notions or stereotypes.

If a child does not feel a diagnosis fits but the diagnosis could help them access services, Dr. Galvan explains that the process is about supporting them and giving them time. “If a child doesn’t feel like it’s a diagnosis that fits, and it would be helpful to have the diagnosis, for example, to obtain support in school or obtain other therapies or Regional Center services, usually it’s usually about walking with them on that journey and giving them whatever information they need. Finding someone that they can talk to within the community who also identifies as neurodiverse can be helpful. And then, once they’re ready for the diagnosis, providing it.”

Why parents and children may see diagnosis differently

Dr. Simun explains that some of these differences come from generational shifts in how disability has been viewed. She says that many parents grew up in a time when disability was often associated with shame, while younger generations may view diagnosis as a way to understand themselves and connect with others. “There was a huge generational shift,” she says. “So my generation, your kid having a disability is something to be ashamed of. We didn’t even have the term neurodiversity, right? You were either ‘normal’ or you were ‘abnormal,’ and ‘abnormal’ was always a bad thing.”

Dr. Simun explains that many younger people are now finding connection and community with others who share similar experiences. “There’s been a shift, and it’s a generational shift, and you really, really see that in Gen Z. This willingness, and in fact, even an interest in seeking out commonalities with other people with your same issue. Some people will say negatively that it’s identity-seeking, but that’s not bad. If you want to know other people that have had your struggle and have had your strengths, and you want to learn from those people and you want to commune with those people, it’s a great thing.”

Dr. Simun says that many young people today view diagnosis very differently than previous generations did. “The stigmatization of neurodiversity does not affect [Gen Z and Gen Alpha] in the same way that it affects prior generations. In fact, they feel relieved a lot of times to know that it’s the way their brain is wired and not something they’re doing wrong. It helps them in that they can find affinity groups. They can go and research things themselves and find out what are some good compensatory skills for reading or spelling.”

When families expect one diagnosis but the evaluation shows something else

Dr. Akins adds that disagreements can also happen when families come into an evaluation strongly believing a child has a specific diagnosis. He explains that sometimes the assessment shows a different explanation for the child’s challenges.

“Oftentimes a parent might see their child struggling in multiple environments, and autism might make sense to them. And then we do the assessment, and there’s a better explanation. Maybe they have ADHD and language delay, or anxiety and language delay. But they’ve been worried about autism and reading about it, and it seems like the right answer. And then they come in now and they just don’t meet criteria, you know. So we’ve just got to talk it through and be careful and explain why what we’re seeing is what we’re seeing,” he explains.

Have you ever found yourself questioning whether your child’s diagnosis truly fits? Maybe some parts of the diagnosis make sense, but other parts don’t seem to describe your child at all. Or maybe the therapies and supports your child is receiving don’t seem to be addressing the challenges you’re seeing.

Dr. Akins explains that while evaluations are typically thorough, there are times when a diagnosis may need to be revisited. “What I would say to families is, if you get a diagnosis . . . and you start to participate in care and the providers that are providing therapies feel like it’s a little bit of a mismatch. And then you go to support groups and you think, ‘My child doesn’t really seem to kind of fit in. I’m not experiencing the same issues that other parents are. My child only does a couple of those things, not very many of those, and this doesn’t seem quite right,’ then I definitely think it’s time to start asking questions.”

Hear Dr. Akins explain what parents can do when a diagnosis doesn’t feel like the right fit:

Parents generally know their child best, but it can be discouraging when you bring up concerns and feel like you are not being heard. Dr. Galvan explains that this happens often and encourages families to seek out providers who listen, take their concerns seriously, and work with them toward the next steps. “What I typically recommend if a parent feels they aren’t being heard by their pediatrician regarding their concerns is [find] another pediatrician. You can always ask to talk to somebody else in the clinic . . . which is a lot to ask of a family — to find another pediatrician — but finding a provider that you trust and you feel like does listen to your concerns is really important.”

Dr. Galvan also reminds families that there are other pathways to evaluation and support. For children under age three, families may be able to seek evaluation through their state’s early intervention services, like Regional Center in California. For children over age three, requesting an evaluation through the school district for an IEP can also provide additional information and support. “If your child is over three, then you can think about requesting an IEP through the school district to see if that helps provide any clarity on diagnoses, especially if a lot of the educational, behavioral, academic, or developmental concerns are happening in the school as well. So the school can be another ally to help advocate for supports.”

Some parents may wonder whether pursuing a diagnosis is worthwhile if they do not plan to use medication as part of their child’s support plan. Experts explain that medication is only one possible tool — and a diagnosis can open the door to many other forms of support, understanding, and accommodations. ADHD, for example, is one diagnosis that falls under this concern.

Behavioral supports are often the first step

Dr. Akins explains that families may choose to use medication only in certain situations, or not at all, while still benefiting from a diagnosis and support strategies.

“First of all, we don’t recommend medication in young kids who have an ADHD diagnosis. The American Academy of Pediatrics — really, all the academies — now recommend behavior treatments. For children who do have a diagnosis of ADHD, either behavior treatments or medication are front-line or first-line treatments. Many families elect not to use medication or just to use it episodically, meaning in times where there’s a lot of stress on attention and focus,” he says.

Dr. Galvan explains that while medication can be helpful for some children, it is only one piece of a much larger support system.

“Medication has sometimes a role in disability and in mental health and in medical care, but we know with disability, having a lot of behavioral supports can be helpful. I really am one that advocates a lot for behavioral supports and services, and so even if a parent is not interested in medication for ADHD, for example, I always tell parents there’s so much more that you can do behaviorally, like learning about the ADHD brain and how to support your child’s ADHD brain. How can your child figure out what works for them, what doesn’t work for them? And looping in their pediatrician to help advocate for accommodations in the school system or requesting an IEP evaluation.”

A diagnosis opens the door to other evidence-based supports

Dr. Simun adds that for children with ADHD, medication is only one of several evidence-based approaches. With a diagnosis, kids with ADHD can navigate life with supports like accommodations at school and at work.

“There are two things I would say about ADHD. One is that medication is only one type of intervention. There are numerous other interventions that are scientifically validated that don’t involve psychopharmacology. One of those methods is direct training with computer-based training programs. One of them is called Brain Train. One of them is called Cogmed. They are video game–based programs that train the brain. Another promising area that for certain types of ADHD is very effective is EEG neurofeedback. EEG neurofeedback can be very effective for children. It can be as effective as medication.”

A diagnosis can help your child access accommodations throughout life

Dr. Simun adds that one of the biggest benefits of a diagnosis is that it can help children receive accommodations that allow them to demonstrate what they know — not only in school, but later in college and the workplace.

“Behavioral methods can help, and of course accommodations. If you get the diagnosis of ADHD, the school then has to provide you and the workplace has to provide you with accommodation. And those accommodations can be very helpful in letting those kids show what they know, especially in timed situations or noisy environments. You can accommodate their distractibility. It can give them supports for high-stakes testing, like for the College Board. It can give them accommodations at university. It can give them accommodations in the workplace.”

Many developmental and learning disabilities occur together. For example, dyslexic children often have ADHD, and children with autism often have auditory processing disorder or sensory processing disorder. Having one diagnosis doesn’t necessarily explain every challenge a child is experiencing. Experts say it’s important to look at the whole child and identify any co-occurring conditions because they may require different supports, interventions, or medical care.

A diagnosis doesn’t explain every challenge

Dr. Simun explains that when a child has autism, ADHD, Down syndrome, or another diagnosis, it’s important to understand why they’re struggling in a particular area, such as reading, rather than assuming every difficulty is caused by that diagnosis. “It is important to find out why and where the reading deficit is. It’s not necessarily because they have autism. It can be because they have autism, but it can also be co-occurring Down syndrome.”

One example is with reading: some children may have trouble with sight words, which calls for one kind of intervention. Trouble with sound-symbol correspondence calls for a different intervention; the same with phonics or sound blending or comprehension or fluency. “Some kids have problems with all those aspects. Some kids have problems with one aspect, and knowing which aspect and which type can lead to a better intervention,” she says.

Providers should routinely look for co-occurring conditions

Dr. Akins explains that when a child is diagnosed with a developmental disability such as autism or Down syndrome, providers should also routinely screen for other conditions that commonly occur alongside it.

“If we see a child with autism, every time we look for co-occurring anxiety and ADHD and the feeding issues and the sleep issues. . . . We make sure that their hearing and vision are okay. . . . We think through all the things that are fixable things that we’re likely to be able to treat successfully. Having vision problems is unlikely to be the full cause of your developmental disability, but it doesn’t help if we don’t address your vision problems.”

For children with Down syndrome, he explains that regular screening for associated medical conditions has become a standard part of care because treating those conditions early can significantly improve long-term outcomes.

“We have clinical practice guidelines from the American Academy of Pediatrics . . . with a list of conditions we’re supposed to assess for every single time based on the child’s age . . . to check for things that are more common in that population: thyroid disorders, a leukemia screener, a sleep study by age four because sleep apnea is so common, celiac disease, hearing and vision. . . . We know that it makes an enormous difference in their long-term outcomes related to both health and development if we address those things right when they happen.”

While a diagnosis can help children and families access support, understand themselves, and connect with others, parents may also have questions about whether there are any downsides to having a diagnosis documented. Experts explain that these conversations are important and should include the potential impact of stigma, misconceptions, and making sure a diagnosis is accurate and meaningful for the individual child.

Concerns about stigma, discrimination, and how a diagnosis may be viewed

Dr. Galvan explains that some families and teens worry about how a diagnosis may affect them, especially if they have experienced or are concerned about stereotypes and prejudice toward people with disabilities. “If within the particular community there are a lot of stereotypes or prejudices toward individuals with disability or disabled individuals . . . adding that diagnosis could create a lot of distress to the individual because, again, of just all of the negative attention that those individuals with that disability get.”

She explains that many teens and parents have concerns about whether a diagnosis could affect how others view them or create challenges later in life. “I do see a lot of teens worry about that and parents too, about, ‘If my child does have this label in their medical chart, that will follow them into adulthood.’ . . . Could they face discrimination in the future? Could they face discrimination now or prejudice now? So that is again a part of the conversation I have with families about the implications of having that diagnosis in their chart, especially as they get older.”

Dr. Galvan explains that providers need to be thoughtful about the diagnoses they give and make sure a diagnosis is actually helping the individual. “There are certain diagnoses I do tend to stay away from because I find that certain populations, certain individuals, are overdiagnosed with those diagnoses. And ultimately my question is, what are we getting with the diagnosis?”

Dr. Galvan gives the example of being cautious about assigning diagnoses that may reflect a child’s behavior without exploring what might be causing that behavior. “For example, I feel like frequently, a lot of Black and brown children are labeled as oppositional and defiant really early on, and that is a diagnosis that I’m very cautious to give because for me I think, ‘Well, what is the child trying to tell me?’ If they’re getting up from class, is this a learning disability that we’re missing? Is this ADHD? Is there anxiety? Is there trauma? What else are we missing from the diagnosis by just putting on that they’re oppositional and defiant?” She adds that because of this, she makes sure that with giving any diagnosis, there is some benefit coming from it, and that it’s not just to label a child.

The importance of avoiding overdiagnosis

Dr. Akins explains that a diagnosis should be given only when a child meets the criteria and when their challenges significantly impact their daily life. For example, for autism, “The big thing is that you really have to have impairment in these areas. If you have some social struggles, and you have some friendships that don’t go well, but you have three or four really close friends, and you can navigate most social situations — or maybe you’re only having struggles at home but not in social activities, instructional social activities, and not at school — and don’t have impairment in all three in two of those three settings, then I think you’re unlikely to really meet criteria for autism,” he says.

He explains that because many people now read about autism before an evaluation, it is important to look closely at the severity, frequency, and impact of symptoms. “People read a lot about autism before they come in, and they’ll clearly describe to me symptoms that they’ve read about,” he explains. “But the severity, frequency, intensity, duration of those might be really low [comparatively] or relatively infrequent, low intensity and duration. I think it’s important that you see somebody that’s really well trained in those situations because there is a real risk for overdiagnosis.”

Does a diagnosis “overmedicalize” a child?

There is a very real worry that once a child receives a diagnosis, every behavior will be viewed through a medical lens or that they’ll feel pressure to constantly search for treatments. Dr. Akins acknowledges that this can happen, but he says the goal of diagnosis should not be to “fix” a child. Instead, it should help families understand their child, treat conditions that are treatable, and support them in living their best life.

He explains that after a diagnosis, many families go through a period of adjustment and acceptance. “I think for most of us, there’s some grieving that occurs when a diagnosis happens. Doesn’t have to be grieving, but you have to move toward acceptance and understanding either way. Some people are action-oriented right away, and they’re affirming right away and move forward, but for some families, one of the risks of overmedicalization is that you get stuck looking for causes and treatments that will change everything, and I don’t think that’s a really rewarding way to move through.” He emphasizes that it’s important to treat medical conditions that can be treated, while also recognizing that not every aspect of a disability needs to be changed.

“Definitely for things that are treatable, if we need to improve hearing or vision or seizures or anxiety, we should treat that, and we should understand it and we should have a strategy and move forward. But if you’re seeing behaviors that are kind of core autism behaviors related to sensory issues or rigidity, and you’re continuing to seek treatments and going to lots of doctors to get opinions, but you’re not getting really clear answers other than, ‘Yeah, I think it’s autism,’ then I feel like the risk there is that we spend a lot of time and energy and resources looking for medical treatments that just aren’t available.”

Instead, he encourages families to focus on helping their child thrive. “Our goal should be to help folks live their best lives and to support them as they are and to feel comfortable as they are, and to provide resources and help them learn skills to be successful in all settings, but really to understand people’s strengths too.”

Similarly, Dr. Galvan explains that diagnosis is not about fixing a child or “finding a cure” — it is about better understanding them, recognizing their strengths and challenges, and connecting them with the right supports. “It’s about meeting parents where they are in the journey of diagnosis, understanding what is their understanding once they get a diagnosis, what does that mean, and then what does it mean for us? There’s no cure for disability, and it’s about being neuroaffirming and understanding that even though your child has this diagnosis, not everyone is the same with that. Not everyone who has that disability is the same. It doesn’t change who your child is. It just helps give us a framework and then an understanding of your child, and then accessibility to services and therapies that can help them in their challenges and in their strengths.”

For older kids and teens, receiving a diagnosis is rarely a one-time conversation. Both Dr. Galvan and Dr. Akins emphasize that the weeks and months after a diagnosis are just as important as the evaluation itself. Learning more about the diagnosis, connecting with other neurodivergent people, and having ongoing conversations can help teens better understand themselves and decide what supports they need.

Watch Dr. Galvan explain more about why teens should be part of the diagnosis conversation.

Dr. Akins says that for some teens, accepting a diagnosis can be especially difficult if they’ve spent years being teased or bullied. “I’ve seen teens recently whose peers at school have been telling them for a few years, ‘What’s wrong with you? You’ve got autism,’ or, ‘You’re so autistic,’ when they don’t have a diagnosis. And when you make the diagnosis there, and it’s been used to tease and bully you for years, that’s pretty hard to accept that that’s your diagnosis. Especially if you’re a youth who has some struggles with social insight and peer relationships, and so that can be a really difficult conversation.”

He says it helps to focus on the teen’s strengths and connect them with people who share similar experiences. “I think if we talk through the positives and we take a strengths-based approach and we talk about all the great things that that child has going for them too, and connect them with other autistic individuals who are living their best lives, and get them connected to a peer group that has similar interests, that can be really helpful. But the first visit can be difficult.”