Was My Child’s Autism Misdiagnosed?
What is the rate of autism misdiagnosis?
When you begin to notice your child is not following the same developmental trajectory as his/her peers, it can be an unsettling time full of unanswered questions. You are eager to find ways to help your child catch up, ease his/her symptoms, and make sure he/she has the accommodations necessary to succeed in school. Before a plan of action can be put into place, a diagnosis is needed. While each child with an autism spectrum disorder (ASD) will present differently, having a diagnosis is an important foundation for obtaining help for your child.
Not only will a diagnosis provide a framework for what ASD looks like for other children (and quite possibly your child) it is needed by most schools to provide accommodations via an Individualized Education Plan (IEP) in the United States, but also to be eligible for government programs and assistance. Autism exists on a spectrum from high-functioning to lower-functioning, but common symptoms and patterns exist under the ASD umbrella that can help you decide what might work for your child based on the experiences of others on the spectrum.
According to the Centers for Disease Control and Prevention (CDC), about 1 in 59 children have an ASD. They have also found that ASD occurs, “more often in people who have certain genetic or chromosomal conditions. About 10% of children with autism are also identified as having Down syndrome, fragile X syndrome, tuberous sclerosis, or other genetic and chromosomal disorders.” (Autism Spectrum Disorder [ASD], 2018) They also note that ASD “commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses. The co-occurrence of one or more non-ASD developmental diagnoses is 83%. The co-occurrence of one or more psychiatric diagnoses is 10%.” (Autism Spectrum Disorder [ASD], 2018) These statistics illustrate the importance of receiving an accurate diagnosis, or diagnoses so that your child can receive care tailored to his/her individual needs.
The path to diagnosis: autism screenings, school, and specialists
Parents and caregivers will notice their child’s symptoms at different times. Some parents will notice symptoms before the child’s first birthday and can receive a “reliable, valid, and stable” diagnosis by age two, but most children are not diagnosed with ASD until after four years.” (Autism Spectrum Disorders [ASD], 2018) The Autism Science Foundation has curated a list of common early signs of an ASD in infants and children that are usually indicators that your child may need to be evaluated.
As early as six to 18 months you might notice that your baby “fixates on objects or does not respond to people…Older babies and toddlers may fail to respond to their names, avoid eye contact, lack joint attention (sharing an experience of observing an object or event by gazing or pointing), or engage in repetitive movements such as rocking or arm flapping. They may play with toys in unusual ways, like lining them up or focusing on parts of toys rather than the whole.” (“Early Signs of Autism,” 2018)
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Screenings for autism are typically done at 18 and 24-month check-ups, but if you notice signs of autism in your child sooner, do not hesitate to contact your child’s pediatrician. Developmental screenings are available at 9, 18, 24, and 30 months of age, but screenings specific to your concerns and your child’s needs can be conducted at any time. A pediatrician is usually the first point of contact for parents who notice developmental delays in their children, but sometimes children who are higher functioning may not show signs until they enter school and are faced with new stimuli, social situations, and schedule changes. Teachers are trained to look for signs of developmental delays and can be an excellent partner in helping you to relay possibly delays to the pediatrician.
Once your child’s pediatrician is aware of possible developmental delays, he or she may recommend seeing a specialist to accurately diagnose your child and put into place a treatment plan. These specialists may include educational psychologists, geneticists, developmental pediatricians, neurologists, psychiatrists, speech therapists, occupational therapists, physical therapists, or social workers.
How can you distinguish autism from other conditions?
Autism symptoms can mimic or overlaps with several other conditions making it difficult for them to distinguish from one another. Doctors use the Diagnostic and Statistical Manual, Fifth Edition (DSM-5) to diagnose autism. In addition to the DSM-5, doctors will likely test your child for a variety of other conditions including fragile X syndrome, sensory processing disorder, anxiety disorders, hearing or vision impairments, and genetic diseases. By employing a variety of specialists, you will have a more well-rounded picture of your child and his/her symptoms. This is called differential diagnosis (distinguishing a condition from others that present similarly). The Autism Society provides this list of conditions similar to autism that require careful consideration before your child is diagnosed:
- Congenital rubella syndrome
- Cornelia de Lange syndrome
- Down syndrome
- Fragile X syndrome
- Klüver-Bucy syndrome
- Landau-Kleffner syndrome
- Lesch-Nyhan syndrome
- Untreated phenylketonuria (PKU)
- Prader-Willi syndrome
- Rett syndrome
- Tourette syndrome
- Tuberous sclerosis
- Williams syndrome
While receiving an accurate autism diagnosis is important, many children receive multiple diagnoses. Children with autism often also have anxiety disorders, depression, sensory processing disorder, allergies and immune system deficiencies or dysregulation, chronic constipation or diarrhea, low IQ, low muscle tone, high or low pain thresholds, PICA or other eating disorders, seizures, sleep problems, hearing or visual impairments, or savant syndrome. (“Related Conditions,” 2016)
What is the long-term importance of accurate diagnosis?
You have likely heard that early intervention is important, but equally so is an appropriate intervention. Receiving an accurate diagnosis is key to making sure your child receives the most appropriate therapies for his/her specific needs. The therapies your child needs will likely vary from other children with autism, even if he/she is in a similar place on the spectrum. One high-functioning child with social anxiety may need psychotherapy while another high-functioning child who struggles with motor skills may need occupational therapy. It is important to receive not only a diagnosis but a specified list of your child’s unique struggles and strengths.
This comprehensive guide to autism treatments and therapies further outlines the variety of options available and would be an excellent starting point for identifying what might work best for your child.
A creative child may benefit more from art therapy while an active child may receive more benefit from hippotherapy. Regardless of the types of therapies your child receives, the goal is always to help the child live the best life he/she can. Receiving an accurate and comprehensive diagnosis is the first step to helping your child access not only the best services to help him/her succeed in school, create family bonds, and help him/her learn a communication style that works best for your family.
Autism Spectrum Disorder (ASD). (2018, April 26). Retrieved from https://www.cdc.gov/ncbddd/autism/data.html
Early Signs of Autism. (2018). Retrieved from https://autismsciencefoundation.org/what-is-autism/early-signs-of-autism/
Related Conditions. (2016). Retrieved from http://www.autism-society.org/what-is/diagnosis/related-conditions
Katherine G. Hobbs is a freelance journalist and university student studying English, with an emphasis on journalism, and psychology. She is interested in the impact of having a special needs child on the family dynamic. Katherine is dedicated to bringing awareness of resources to families and providing help to those who love their autistic children. You can find her online at katherineghobbs.com.