How Often Does Autism Misdiagnosis Occur

In 2019, 25% of 4,498 children had autism symptoms but did not get an official diagnosis.

In the last twenty years, autism diagnoses have gone up a lot. This is true for young children and minority groups. This rise makes it very important to get the diagnosis right. If you are worried about autism misdiagnosis, you are not the only one.

Key Takeaways

• Autism misdiagnosis happens a lot. Studies show many people get diagnosed years after their first symptoms.
• More people know about autism now. Better screening tools help find more cases. But this can also cause more mistakes in diagnosis.
• Autism symptoms can look like other problems. These include ADHD, anxiety, and language disorders. This makes it hard to diagnose autism correctly.
• Culture and money issues can slow down autism diagnosis. This is true for minority and low-income groups.
• Seeing a specialist for a second opinion can help. It can confirm or change an autism diagnosis.
• Talking clearly with doctors about symptoms is very important. Sharing concerns helps doctors give the right diagnosis and treatment.
• Using resources and joining support groups can help families. These groups give advice and help with the diagnosis process.
• Regular doctor visits are important. Checking a child’s progress often helps make sure the autism diagnosis is correct.

Prevalence

Statistics

Autism rates have changed a lot in twenty years. Many more children get diagnosed now. The number has gone up by 300%. This means more families wonder about autism misdiagnosis. Here are some facts:

• In 2000, 67 out of 10,000 8-year-olds in the U.S. had autism. By 2018, it was about 230 out of 10,000. That is a 243% jump.
• In 2020, experts said 27.6 out of every 1,000 8-year-olds had autism.
• In 2025, about 1 in 31 children in the U.S. have autism.
• Boys get diagnosed with autism more than girls. Girls often get diagnosed late or with something else.
• Autism is more common in Asian, Black, Hispanic, and multiracial children than in White children.

Trends

Autism diagnoses keep going up each year. This does not always mean more kids have autism. Many things cause this rise:

• Doctors have better tools to find autism early.
• Parents, teachers, and doctors know more signs of autism.
• More kids get checked because services are easier to get.
• The rules for autism have changed, so more kids fit the diagnosis.
• Some kids lose their autism diagnosis later. About 13% of kids with autism do not meet the rules later. Between 18% and 37% of kids diagnosed at age 2 do not show signs by age 4. In one survey, 38% of kids ages 3 to 17 who had autism before did not have it later.

These changes show why autism misdiagnosis happens. How experts define and find autism affects who gets diagnosed and who does not.

Awareness and Screening

Better awareness and screening help find autism sooner. Doctors and schools use new tools to check young kids. Early checks help families get help faster.

Diagnoses are more accurate because experts know what to look for. More kids get help because the rules for autism are wider.

But this also means more worries about misdiagnosis, especially in very young kids. Researchers keep working to make early diagnoses more steady and correct.

More autism diagnoses do not always mean more kids have autism. It often means better checks, wider rules, and more people knowing about autism.

Autism Misdiagnosis: Causes

Overlapping Symptoms

Autism shares symptoms with other conditions. This makes it hard for doctors to know what is wrong. For example:

• Inattention and hyperactivity can seem like ADHD.
• Social withdrawal may look like anxiety or selective mutism.
• Repetitive behaviors, like lining up toys, can look like OCD rituals.
• Sensory issues and strict routines often show up in anxiety disorders.

Doctors sometimes mix up these symptoms. A child with autism might get diagnosed with ADHD or anxiety first. This mix-up can slow down getting the right help.

Studies say 25% of kids with autism symptoms do not get an official diagnosis. You might feel upset if your child’s symptoms fit more than one condition.

If your child’s symptoms match more than one disorder, ask your doctor for a full check. This can help stop autism misdiagnosis.

Diagnostic Challenges

Getting an autism diagnosis is not easy. Doctors use special tools like the Autism Diagnostic Observation Schedule and the Autism Diagnostic Interview-Revised. These tools help doctors tell autism apart from other conditions. But it is still hard sometimes.

A past diagnosis can hide new problems. For example, if your child has autism, doctors may miss signs of psychosis. This is called diagnostic overshadowing.

The lines between autism and other conditions are not always clear. This is true for young children and adults. Other neurogenetic conditions can make things harder.

Doctors say finding autism early is important. If you get help early, therapies work better for autism and other disorders.

A study in 2021 found over 75% of people got an autism diagnosis about eight years after their first mental health check. You may need to see many specialists before you get answers.

Population Differences

Your background can change how fast you get an autism diagnosis. Some groups wait longer than others. Look at the table below to see how diagnosis rates are different:

Money and education matter a lot. Language and culture can make it harder to get the right diagnosis. Old practices like redlining limit access to community help.

Experts say these differences are not because of biology. They happen because some groups do not know or worry as much about autism. This means fewer diagnoses and less support.

If you are in a minority group or have less money, you may need to speak up more for your child. Ask about early help and community support.

Autism misdiagnosis can happen for many reasons. Overlapping symptoms, diagnostic challenges, and population differences all matter. You can help by learning about these causes and asking questions during the diagnosis.

Conditions Confused with Autism

ADHD

ADHD and autism have many things in common. Both can make it hard to focus. Both can cause impulsive actions. Both can affect how kids act with others.

Doctors see kids who cannot sit still. Some kids have trouble paying attention. These signs may look like ADHD. But they can also mean autism. Sometimes, a child with autism gets told they have ADHD first.

This can slow down getting the right help. You may see your child struggle with routines. They may not listen well. They may have trouble making friends. These problems can happen in both ADHD and autism. Doctors use special tests to tell the difference. But mistakes can still happen.

If your child cannot focus and has social problems, ask your doctor to check for both ADHD and autism. The right diagnosis helps you find the best help.

Common conditions that get mixed up with autism are:

• ADHD
• Anxiety
• Depression
• Epilepsy
• Gastrointestinal problems

Sensory Disorders

Sensory disorders can look like autism. Your child may react strongly to loud sounds. They may not like bright lights or certain textures.

Some kids cover their ears. Some avoid foods with certain feels. These reactions can happen in autism and sensory processing disorder (SPD). About 83% of autistic adults have sensory problems too.

This makes it hard to tell the difference. Research shows people with autism and SPD have similar brain patterns. Doctors sometimes mix up these two conditions because the signs look the same.

You may wonder if sensory problems mean autism. Not always. Sensory issues can happen without autism.

Doctors need to look at all the signs before they decide. If you see strong reactions to sounds or textures, talk to your doctor. Ask for a full check to avoid autism misdiagnosis.

Sensory problems are common in autism. But they can also show up in other disorders. Careful checks help you get the right answers.

Mental Health

Mental health problems can look like autism too. You may see mood swings or anxiety. Your child may have trouble with social skills.

Mood disorders, anxiety, and personality disorders can be confused with autism. Some kids show signs of depression. Some avoid being with others. These behaviors can fit both autism and mental health problems. Doctors sometimes mistake avoidant personality disorder, OCD, or schizophrenia for autism.

If autism is misdiagnosed, your child may get the wrong help. They may not get the support they need. If you see changes in mood or how your child acts, ask your doctor about all possible causes. A full check helps you find the right answer.

Getting the right diagnosis is important. It helps you pick the best therapies and support for your child.

Language Disorders

You may notice that language disorders often get confused with autism. Many children struggle to speak or understand words.

Some children do not talk at all. Others use only a few words. These signs can look like autism, but they may point to a language disorder instead.

Parents usually spot language problems first. You might see your child not speaking as much as others their age.

You may worry when your child does not respond to questions or has trouble following directions. These early signs can make you think about autism. Sometimes, doctors also see these signs and think of autism right away.

About 25% to 30% of children with autism speak very little or not at all. If doctors do not check language skills carefully, they may miss a language disorder. You want to make sure your child gets the right tests.

Language disorders can show up in many ways. Some children have trouble making sentences. Others cannot understand what people say. Some mix up words or use them in odd ways.

If your child struggles with speech, ask your doctor for a full language assessment. This helps you find out if your child has a language disorder, autism, or both.

Doctors found that children with autism show four main types of language abilities. Some speak well, some use short phrases, some repeat words, and some do not speak at all.

This wide range makes diagnosis hard. You may see your child fit into one group, but not another. Doctors sometimes think all language problems mean autism. This is not always true.

Here are some ways language disorders can look like autism:

• Your child does not talk or talks very little.
• Your child uses words in unusual ways.
• Your child repeats words or phrases often.
• Your child has trouble understanding what others say.
• Your child cannot follow simple instructions.

Language disorders can also show up with other problems. Your child may have trouble making friends or joining group activities.

You may see your child get frustrated when they cannot express themselves. These social problems can look like autism, but they may come from language issues.

Doctors need to look at all the signs. They use special tests to check language skills. You can help by sharing what you see at home and school.

If you feel unsure about your child’s diagnosis, ask for a second opinion. Getting the right answer helps your child get the best support.

Language disorders and autism can look alike, but they are not the same. Careful checks and open communication with your doctor help you find the right path for your child.

Consequences

Treatment Impact

If you get the wrong diagnosis, treatment may not help. You might not get the right care for your real problem.

Sometimes, doctors pick therapies that do not fit your needs. For example, ABA therapy may not be the best choice. Here are some problems that can happen:

• You may not get the right treatment for your condition.
• Mistakes or delays in treatment can make things worse.
• You might have tests or procedures you do not need.
• Families often pay extra for treatments that do not work.
• You could miss out on better treatment options.

Getting the right diagnosis early helps you find good support. If treatments do not help, ask your doctor to check the diagnosis again.

Daily Life

Autism misdiagnosis can change your daily life in many ways. The effects go beyond just medical care. Look at the table below to see how different parts of life can be affected:

You might also see these changes:

1. Children may miss out on important support services.
2. Behavior problems can get worse with the wrong help.
3. Learning and growth can slow down without the right diagnosis.

Some people feel worried or sad because they did not get help early. You may look back and feel bad about missed chances.

Emotional Effects

Misdiagnosis can cause strong feelings. You or your child may feel misunderstood. Low self-esteem can happen when support does not fit your needs.

Anxiety and depression are common. Some people feel alone or left out from friends or family. Emotional pain can grow when treatments do not help or make things harder.

If you feel stressed or alone, you are not the only one. Many families have these feelings after a misdiagnosis. Talking to a counselor or support group can help you feel better.

Getting the right diagnosis is important for your health, your life, and your feelings. If you have worries, keep asking questions and look for support.

What to Do

Second Opinion

If you think there is an autism misdiagnosis, you can get a second opinion. This helps you feel sure about your child’s diagnosis. Here is how you can start:

1. Talk to Your Current Doctor
   Tell your doctor you want another opinion. Thank them for their help. Explain your worries in a clear way.
2. Choose a New Specialist
   Find a specialist who knows about autism diagnosis. Check their background and training.
3. Gather Medical Records
   Collect all important papers. Bring reports, your child’s history, and your own notes. Give these to the new specialist.

You can ask questions at every step. You have the right to know about your child’s diagnosis. A second opinion can help you get the best support.

If you feel unsure, trust yourself. Many parents find answers by seeing another expert.

Communication

Talking clearly with doctors and specialists is important. You can help your child by sharing good information. Here are some ways to talk better:

• Ask for more time at appointments. You can explain your child’s symptoms better if you do not feel rushed.
• Ask your doctor to use specific questions. It is easier to answer clear questions than general ones.
• Use the way you like to talk. You can speak, write, or use notes. Doctors should respect your choice.

Get ready before each visit. Write down your worries and questions. Make a list of symptoms you see at home or school. Share examples of your child’s behavior. This helps doctors understand your child better.

Honest and clear talking helps doctors avoid mistakes. You can help stop autism misdiagnosis by sharing details about your child.

Resources

There are many resources if you worry about autism misdiagnosis. These groups give guides, support, and information:

• Autism Speaks has a guide for families.
• The Office of National Autism Coordination lists many resources.
• The Doug Flutie Jr. Foundation for Autism helps families get care.
• Exceptional Lives gives a free directory and guides.
• The Center for Parent Information and Resources helps parents with information.
• The National Autism Center shares resources for families.
• The Federation for Special Needs helps parents of children with disabilities.

You can use these resources to learn more and meet other families. Many guides show how to get a second opinion, talk to doctors, and find services.

You do not have to do this alone. Many families use these resources to get help and answers.

Advocacy

Advocacy means you stand up for yourself or your child. You help by speaking up and asking for what you need. If you face an autism misdiagnosis, you might feel confused or worried. Advocacy helps you find answers and get the right support.

Start by learning about your rights. Schools and doctors must listen to you. You can ask questions and request more tests. If you think something is wrong, you can say so. Your voice is important at every meeting.

Many families join advocacy groups for help. These groups give support, information, and a place to belong. You can meet other families who have the same problems. They share tips and stories so you do not feel alone.

Here are some ways to advocate for yourself or your child: Keep notes about symptoms, doctor visits, and school meetings. Ask for written reports from teachers and doctors.

Bring a friend or family member to meetings for support. Practice what you want to say before appointments. Stay calm and polite, even if you feel upset. After meetings, send an email or note to follow up.

You do not have to do this by yourself. Many groups help families with advocacy. They give resources, training, and advice. Some groups focus on certain needs or people. The table below lists some groups that help families with autism misdiagnosis:

Contact advocacy groups if you need help. They can guide you and connect you with experts.

You can also help your child learn to speak up for themselves. Self-advocacy is a skill that gets better with practice. Encourage your child to share their feelings and needs. Help them practice asking questions and making choices.

Advocacy takes time and work. You may have problems, but your actions can lead to better care. Remember, you know your child best. Trust yourself and keep asking for answers. With help, you can make sure your child gets the support they need.

Improving Accuracy

Diagnostic Tools

You can help make autism diagnosis better by using new tools. Some new tests find signs that old tests miss. Some tools look for differences between boys and girls.

The Gendered Autism Behavioural Scale (GABS) helps doctors find autism in girls and women. Girls often show signs that are not the same as boys. This tool helps doctors see those signs.

Doctors use rules from the National Institute for Health and Care Excellence (NICE). These rules say doctors should talk to parents, teachers, and therapists. Doctors should use more than one test. This helps doctors see the whole picture of your child.

• Tools like GABS help doctors find autism in girls and women.
• NICE rules say doctors should use information from many people and tests.
• Old tools sometimes miss autism in girls, which can cause mistakes.

Ask your doctor if they use new tools and talk to people who know your child.

Team Approach

A group of experts can help get the right diagnosis. Each person in the group has special skills. The team can have doctors, psychologists, speech therapists, and teachers. They share what they see about your child. Working together helps stop mistakes and gives better answers.

You can ask for a team if you are not sure about a diagnosis. This way, there are fewer mistakes with autism diagnosis.

Ongoing Review

You help keep your child’s diagnosis correct by checking often. Doctors need to look at your child’s progress over time.

Ongoing review means regular check-ups and new tests when needed. This helps find any changes or new signs. Studies show kids who get regular check-ups have better diagnoses.

Doctors and families work together to make choices. This teamwork helps fix mistakes and keeps your child on track.

Watch your child’s progress and ask for check-ups. Regular reviews help stop mistakes and help your child grow.

You might have lots of questions about autism misdiagnosis. Experts say it is hard to diagnose for many reasons.

You can get help from doctors and support groups. Many families feel different emotions. Here are some things to remember:

• Your child is special and loved.
• You did not cause these problems.
• There are people and places that can help.
• Taking care of yourself and being patient helps you and your child.

Believe in yourself. You can find hope and answers as you keep going.

FAQ

How can you tell if your child’s autism diagnosis is wrong?

You may notice treatments do not help or symptoms do not match autism. Ask your doctor for a full review. Keep notes about your child’s behavior and share them with specialists.

What should you do if you suspect misdiagnosis?

You can seek a second opinion from another autism specialist. Bring all medical records and your own notes. Ask for new tests and share your concerns openly.

Can autism be confused with other conditions?

Yes, doctors sometimes mistake ADHD, sensory disorders, anxiety, or language disorders for autism. Many symptoms overlap. Careful testing helps find the right answer.

How often do girls get misdiagnosed with autism?

Girls often show different signs than boys. Doctors may miss these signs or diagnose another condition first. You can ask for tools that check for autism in girls.

Will a misdiagnosis affect your child’s treatment?

Yes, your child may get therapies that do not help. The wrong diagnosis can delay support and slow progress. You should review treatments with your doctor if you see no improvement.

Who can help you if you feel lost after a misdiagnosis?

Support groups, advocacy organizations, and counselors can guide you. You can find resources online or in your community. Talking to other families helps you feel less alone.

Can autism diagnosis change over time?

Yes, some children lose their diagnosis as they grow. Regular check-ups help doctors track changes. You should ask for ongoing reviews to keep your child’s care up to date.