Autistic trauma From Misdiagnosis

Misdiagnosis can hurt your feelings a lot and mess up your daily life. About 24.6% of autistic people say they were misdiagnosed. They are often told they have personality disorders, anxiety, or mood disorders.

You might feel like people do not understand you. Sometimes, professionals do not listen to your real needs. They focus on risks instead.

This can cause autistic trauma. You may feel confused, ashamed, and not trust your own feelings. If this happened to you or someone you love, your feelings are real and important.

Key Takeaways

• Misdiagnosis happens to 24.6% of autistic people. This can make people feel confused and ashamed. A correct autism diagnosis helps people know themselves better. It can also help them feel less alone.
• Misdiagnosis often leads to wrong treatments. These treatments do not help autistic people’s real needs. Misdiagnosis can hurt emotions. People may lose trust in themselves. They may feel more anxious. This can make mental health worse.
• Some symptoms are like other conditions. This makes it hard for doctors to diagnose autism. Neurodiversity-affirming support looks at what each person is good at. It also respects differences. This support helps mental health.
• Getting checked again can help people understand themselves. It can also lead to better support that fits their needs. Joining advocacy groups lets people share their stories. It helps them work for fair autism care.

Misdiagnosis and Autistic Trauma

Misdiagnosis happens a lot in the autistic community. Sometimes, you get a label that does not fit you. You might be told you have a personality disorder or mood disorder.

This mistake can cause autistic trauma. Many people feel like others do not understand or help them. About 66.5% of autistic people got at least one wrong psychiatric diagnosis before learning they are autistic. This happens even more to autistic women.

Emotional Impact

Loss of Self-Trust

Getting the wrong diagnosis can make you doubt yourself. You may wonder if your feelings are real. Many people say being told they have something like borderline personality disorder (BPD) makes them feel powerless.

You might feel like you cannot speak up about the label, even if it does not fit you. Losing trust in yourself is a big part of autistic trauma.

Shame and Confusion

Misdiagnosis can make you feel ashamed or confused about who you are. You may not connect with the diagnosis you get. This can make you feel like your feelings do not matter.

You might ask, “Why do I feel different from my diagnosis?” Many people say this is a lonely and confusing time.

When you finally get an autism diagnosis, it can change your life. You may feel understood and start to accept yourself.

Many autistic people say a correct diagnosis helps them understand themselves and feel less shame.

Practical Impact

Inappropriate Treatment

Misdiagnosis can lead to treatments that do not help you. Sometimes, you get medicine or therapy for the wrong condition. These treatments might not work or could hurt you.

For example, children with high-functioning autism often get psychiatric diagnoses that do not match their needs. This can mean more medicine and more side effects.

Barriers to Support

When you have the wrong diagnosis, you may not get the help you need. Waiting for the right help can hurt your well-being. You might miss early support that could help a lot.

Many people have trouble finding autism care, especially as adults. Not getting the right treatment can make daily life and relationships harder.

• Waiting for the right support can hurt your future.
• You might get treated for things you do not have and miss autism help.
• Not enough specialists and services can make daily life harder.

Misdiagnosis is not just a personal problem. It comes from bigger issues in psychiatric evaluation. Many professionals do not know enough about autism, especially in adults and women. This causes high rates of misdiagnosis and autistic trauma.

When you do not get the right diagnosis, you face both emotional pain and real-life problems. Knowing about these effects can help you see your feelings are real and important.

Autism and Overlapping Diagnoses

What is Autism

Autism is a condition that affects how your brain works. You might notice you talk or act differently than others. You may also react to sounds, lights, or touch in special ways.

Experts use new rules to diagnose autism now. The DSM-5 looks at two main things: how you talk with others and if you have repeated behaviors. You must show signs in both areas. Sensory input is now part of the rules, but it was not before.

The ICD-11 puts autism in one group and does not focus on language problems. These updates help doctors learn more about autism. But they can also make it harder to diagnose.

• The DSM-5 changed three areas into two main ones.
• The new rules say you need two signs of repeated behaviors, including sensory input.
• The ICD-11 does not include language problems and puts five disorders into one autism spectrum disorder.

Why Misdiagnosis Happens

Overlapping Symptoms

Some symptoms of autism look like other conditions. Autism shares traits with ADHD, anxiety, and mood disorders. Sensory issues can seem like behavior problems.

Anxiety can look like staying away from people. These overlaps make it hard for doctors to know what is wrong. Many people with autism have other mental health problems. This makes it even harder to tell the difference.

• Sensory issues can be seen as behavior problems.
• Anxiety can look like staying away from others.
• When symptoms overlap, doctors need to check everything carefully.

Masking and Camouflage

You might try to hide your autism traits to fit in. This is called masking. Many people, especially girls and women, copy how others act. Masking can make it hard for doctors to see your real needs.

You might get diagnosed with something else, which can cause autistic trauma. Culture and gender can also affect diagnosis. Doctors may miss autism in people who do not act like the usual cases.

Many doctors do not get enough training about autism. This makes it hard to diagnose autism the right way.

Common Misdiagnoses

ADHD

You might get diagnosed with ADHD if you cannot focus or sit still. Autism and ADHD have many similar signs. Doctors sometimes mix them up.

Personality Disorders

Some people are told they have a personality disorder, like borderline personality disorder. Problems with emotions can cause confusion.

Mood Disorders

Doctors may say you have depression or bipolar disorder. Changes in mood and staying away from people can look like autism.

PTSD

You might get diagnosed with PTSD if you have trauma responses. Autism and PTSD can both cause trouble with feelings or relationships. Sometimes, PTSD is confused with autism, and sometimes autism is confused with PTSD. This makes diagnosis very tricky.

Careful tests and new rules help doctors make better diagnoses, but overlapping symptoms can still make things hard.

Mental Health Effects

Depression and Anxiety

Depression and anxiety can happen if you do not get the right diagnosis. Your feelings and problems may be misunderstood by others.

Sometimes, doctors think your sadness or worry is just part of being autistic. This is called diagnostic overshadowing. You might not get the mental health help you need.

• Many autistic people feel anxious after bad social experiences.
• Some doctors only notice anxiety or depression and miss autism.
• You may worry a lot, which can look like depression or anxiety, but it is really part of being autistic.

If you do not get the right diagnosis, you might feel alone or not supported. This can make your mental health worse.

Trauma Responses

Misdiagnosis can cause trauma responses. What you feel is real and not just in your mind. Your body and mind react to stress in real ways. You may have trouble calming down or handling strong feelings. Some people use unhealthy ways to cope.

• You might have trouble controlling strong emotions.
• Some people use substances to calm their nerves.
• Self-harm can happen to feel better or to calm down.
• Dissociation, or feeling far from yourself, is common, especially when you feel too much sensory input.
• The risk of suicide is higher for autistic people who have trauma.
• You may be more likely to get hurt by others, especially if you have trouble with social cues.

If you notice these trauma responses, you are not alone. Many people with autistic trauma feel the same way.

Identity Struggles

Misdiagnosis can make you question who you are. What you feel inside may not match the label you get. This can make you confused and hard to trust yourself. You may feel pressure to act like others or hide your true self.

• You might start to see yourself in a mixed-up way.
• Overlapping symptoms with other disorders, like borderline personality disorder, can make things more confusing.
• You may feel forced to fit in, which can make you act fake.
• Trauma from misdiagnosis can make it even harder to know who you are.

Building a strong sense of self takes time. Getting the right diagnosis can help you understand yourself and start to heal.

Life Consequences

Education and Work

Misdiagnosis can change what happens at school and work. You might not get the right help or tools you need. When people do not understand your needs, you may feel left out or fall behind.

Many students with autism do not get support because teachers and staff do not know they are autistic. This can make learning harder and lower your grades.

• Misdiagnosis and underdiagnosis often mean you do not get the right support in school.
• Some groups, like girls or people of color, get diagnosed less often. This leads to unfair support in class.
• If your family has less money, you may have even more trouble getting help.
• Without support, you may feel left out at school or work.
• You might find it hard to get or keep a job because people do not understand your needs.

When you do not get the right diagnosis, you may miss out on chances to learn and grow. This can make it harder to find a job or feel good about your work.

Relationships

Misdiagnosis can affect how you connect with others. You may not get the right support to build friendships or keep close relationships. People might not understand your real needs, which can make you feel lonely.

• You may feel more anxious or sad because people do not understand you.
• Late or wrong diagnosis can make it hard to know who you are. This can cause stress in friendships and family life.
• If you get the wrong treatment, your real needs may not be met. This can make social life harder.
• Stigma from a wrong label can hurt your self-esteem and make it tough to trust others.
• Some treatments for other conditions, like BPD, do not help with autism. This can make social problems worse.

You might feel like you do not fit in. Many people with autism say that getting the right diagnosis helps them feel understood and build better relationships.

Access to Support

Getting the wrong diagnosis can make it hard to find the help you need. Many people wait a long time for the right assessment. This delay can lower your quality of life and make you feel lost.

• Delayed or missed diagnosis means you cannot get autism support services.
• Parents often wait 6–9 months just to get an assessment for their child.
• Many children get diagnosed at age 4.4, even though parents noticed problems much earlier.
• After the COVID-19 pandemic, wait times for autism assessments got even longer.
• Without the right diagnosis, you may not understand yourself or get the social and emotional help you need.

Getting the right diagnosis opens the door to support, understanding, and a better quality of life.

Accurate Diagnosis

Why It Matters

Getting the right autism diagnosis can change your life. You learn what your brain needs to do well. Knowing you are autistic helps you find support and feel less lost.

Early and correct diagnosis helps you and your family understand your strengths and challenges. You get a chance to build new skills and have a better life.

• Getting help early helps you learn skills and enjoy life more.
• Good diagnosis helps you get the best help and avoid problems.
• Family support and more awareness help you feel included.
• Early diagnosis lets you get help that fits, like speech therapy.
• Special help matches your needs, like with language or behavior.
• Families feel less stress and adults can be more independent.

The right diagnosis gives you support, understanding, and hope for a better future.

Neurodiversity-Affirming Support

Neurodiversity-affirming support means people see your strengths and respect your differences. You get help that fits you, not just help to make you act “normal.” These supports focus on what you do well and help you feel safe. You are part of the process and your voice matters.

• Neurodiversity-affirming help lets you connect with others, even if it does not teach social skills.
• These supports lift up your ideas and make safe spaces for you.

1. You see kind words that do not call autism a “disorder.”
2. People respect how you talk, move, and think.
3. You set your own goals and speak up for yourself.
4. You get choices about things like stimming or schedules.
5. You do not have to act “normal” or hide who you are.

Neurodiversity-affirming support helps you feel important and understood.

Rebuilding Identity

After a misdiagnosis, you might feel lost or unsure about yourself. Getting the right diagnosis helps you rebuild who you are. You start to see your real strengths and accept your differences. You learn that your feelings and experiences matter.

• Knowing yourself and feeling seen helps you rebuild your identity.
• You need stories and examples that match your own life.
• Therapists and helpers should see your true self and be honest with you.

When you know you are autistic, you can start to heal and grow. You feel proud of who you are and build a life that fits you.

Seeking Assessment

Finding the Right Evaluator

You need someone who knows a lot about autism. Not all professionals have the right training. When you look for an evaluator, check their background. Ask them how they do assessments. A good evaluator listens to you and explains things clearly.

A good assessment uses information from people who know you. This can be caregivers or teachers. The evaluator should watch you directly. The process often starts with a special interview. This helps them learn about your history and daily life.

• Caregivers and teachers give helpful reports.
• Watching you helps the evaluator see your strengths and challenges.
• A special interview helps gather important details.

Steps to Reassessment

Sometimes, you need a new assessment if the first one is wrong. You might notice that treatments do not help you. Your needs may not be met. A new assessment can give you answers and better support.

Here are steps you can take:

1. Gather your records: Collect old reports, school papers, and notes from past evaluations.
2. List your concerns: Write down what feels wrong about your diagnosis or treatment.
3. Find a specialist: Look for someone who knows about autism assessment.
4. Schedule an appointment: Be ready to wait, as some places have long lists.
5. Share your story: Tell them about your experiences and why you want a new assessment.

A new assessment can help you learn more about yourself and find new support.

Navigating Barriers

You may face problems when trying to get an autism assessment. Many families wait months or even a year for an appointment. If you get help sooner, you can start therapy earlier. But this does not always happen.

“The process took almost a year… if you do the process soon, you can get more therapy and more help for my kid, right? But this doesn’t happen.”

Some barriers include:

• Not enough providers, especially in small towns, means long waits.
• Many centers do not take Medicaid, so families must pay themselves.
• Low pay for providers means some only take private pay.
• Different states use different tools and rules, which is confusing.
• Medicaid has not had enough funding, so many people cannot get help.
• BIPOC and Indigenous families face extra problems, like language barriers and long waiting lists.

Families from different cultures and languages face even more problems. Race, language, and culture can make it harder to get the right diagnosis. These problems come from unfairness in the system.

• People face unfair treatment because of race, culture, or money.
• Indigenous families often wait longer and deal with hard paperwork.

Knowing about these barriers helps you see why the process is tough. You are not alone if you face delays or problems.

Advocacy and Support

Building Networks

Advocacy networks are places where you can share your story. You meet people who understand what you go through. These networks help you get support and fight for fair treatment.

You can join autism rights groups or work with organizations that want better diagnosis and care. Advocacy networks try to fix unfairness, especially for Black autistic children. These kids often wait longer and get misdiagnosed more. When you join, you help make sure everyone’s needs are heard.

• Advocacy groups help Black neurodiverse children get diagnosed sooner.
• Working with advocacy networks helps fight racism and ableism in autism care.
• Networks care about your future and independence, not just quick fixes.
• The best help matches what you want and need.
• Advocacy networks work to fix delays and misdiagnosis from unfair systems.

You can build a strong support system by joining local or online groups. These groups let you share advice, learn new things, and feel less alone.

Self-Compassion

Self-compassion means being kind and gentle with yourself. If you find out you are autistic after being misdiagnosed, you might feel proud and relieved.

Accepting yourself helps you heal and grow stronger. Research shows self-compassion makes your mental health better and raises your self-esteem.

You can practice self-compassion by noticing your strengths and giving yourself credit for your progress.

You can build self-compassion by celebrating who you are and meeting others like you. This helps you feel more confident and hopeful.

Resources

There are many resources to help you and your family with misdiagnosis. Some organizations teach, coach, and give emotional support.

Family Support at The Autism Project helps you learn new skills and find support. They have a ‘Parent to Parent’ training for parents of newly diagnosed children in English and Spanish. Family Support Specialists share information that fits your family’s needs at every stage.

• Adults with autism often have fewer resources, but learning and advocacy can help.
• Stories show that getting the right diagnosis brings relief and new support.
• Family Support at The Autism Project gives help with systems, learning, coaching, and emotional support.
• ‘Parent to Parent’ training helps parents learn and meet others.
• Family Support Specialists share resources and emotional support for parents and caregivers.

You can reach out to these resources to get guidance, learn new skills, and meet people who understand your journey. Support is there for you and your family at every step.

You should respect your own experiences and look for support, no matter what your diagnosis is. Healing from autistic trauma can happen when you know yourself, feel relief, and get help from online autism groups.

Neurodiversity-affirming therapy gives you care that fits you and helps you get stronger. You can join helpful groups, learn more about autism, and ask for another check if you need it. The most important thing is to know yourself and find places that notice your strengths.

FAQ

What is autistic trauma from misdiagnosis?

Autistic trauma from misdiagnosis happens when you get the wrong mental health label. This can make you feel sad and confused. You might have trouble getting the right help. You may feel like people do not understand you or support you.

What are common signs that you were misdiagnosed?

You might see that treatments do not work for you. Your diagnosis may not match how you feel or act. You could feel confused, ashamed, or alone. Many people say they do not feel connected to their diagnosis.

What should you do if you think you were misdiagnosed?

You can collect your records and write down your worries. Try to find an autism specialist. Ask for a new checkup. Tell your story to the evaluator. You deserve answers that fit your needs.

What are the risks of not getting the right diagnosis?

You might get the wrong treatment or miss autism support. This can cause more stress and mental health problems. You may have trouble at school or work. You could feel lost or misunderstood.

What makes autism hard to diagnose?

Autism shares signs with ADHD and anxiety. Many people hide their traits to fit in. Doctors may not know enough about autism. These things make diagnosis hard.

What support can help after a misdiagnosis?

You can join advocacy groups or online communities. Neurodiversity-affirming therapy helps you accept yourself. Family support programs and peer groups give advice and understanding.

What resources are available for families?

You can get help from groups like The Autism Project. They offer training, coaching, and emotional support. Parent-to-parent programs connect you with others who understand your journey.

What steps help you rebuild your identity after misdiagnosis?

You can learn about autism and meet others like you. Being kind to yourself helps you heal. Sharing your story and finding safe spaces help you grow and feel confident.