Statistics Do Not Tell The Whole Story
“Your son has autism.” When I first heard those words in 2004, I had no idea what they meant. Autism? You mean like Rain Man? I felt a sense of relief that the behavioral issues we had seen were not “my fault.” I felt a sense of empowerment, I could do something to help my son. I began to research and learn everything I could about autism. What I have learned over the years, which Tom Chivers and David Chivers discuss in their book How to Read Numbers, is that the statistics can be misleading. According to the Centers for Disease Control, in 2004 the number of children with autism was 1 in 125. This number jumped to 1 in 44 by 2018. The website further notes that boys are four times more likely to be diagnosed with autism than girls.[i]
What accounts for the dramatic increase in numbers? Chivers and Chivers discuss this rise, stating, “Changes in how statistics are recorded can hugely affect the apparent trend in those statistics.”[ii] They detail how changes in the Diagnostic and Statistical Manual of Mental Disorders (DSM) changed from version II published in 1952 to the current version, DSM-5. The term “autism” was not mentioned until the third version.[iii] The current version uses the term Autism Spectrum Disorder and details diagnostic criteria.[iv] These diagnostic changes greatly increased the number of children who receive the diagnosis of autism. Are the number of cases on the rise or are we just being more diligent about diagnosing children with autism?
I wonder how these numbers might change as diagnostic criteria catches up with the ways in which girls present. My daughter was diagnosed with autism earlier this year at the age of 20. I remember when she was young discussing whether to have her tested with my husband and my son’s Special Day Class teacher. Based on what we knew at the time, my husband and I did not think she has autism and therefore never had her tested. We have since learned that “Sometimes, caregivers and even healthcare providers may doubt that a female child is autistic because they do not have the “typical” autism symptoms that are more often seen in boys.”[v] The statistics and information we were given at the time led us to a false conclusion.
Chivers and Chivers book provides insight into how we read numbers and often get it wrong, as my husband and I did with our daughter. Their observations about the changes in the DSM over time provide understanding to the increase in diagnosis of autism.[vi] They also remind us that statistics are more than numbers on a page. Numbers “can go wrong – and give misleading impressions. But along the way we will need to remind ourselves that those numbers stand for something. Often they will represent people, or if not people, then the things that matter to people.”[vii] My son and daughter are more than a number, as are the countless families I have met over the years affected by autism.
There is a benefit to the increase in diagnoses. Families get the help they need. Rather than masking her symptoms, my daughter is learning how to manage them.[viii] She is finding a benefit from her diagnosis in resources at college and empowerment to advocate for herself. As the numbers of diagnoses go up, so does the awareness, research, and funding. If we put the numbers into context and recognize that there is a bigger picture than just an increase in diagnoses, we can use these numbers to our benefit. We do not need to cry out that the sky is falling. We can learn from what the numbers tell us, if we learn how to read them.
[i] “Data & Statistics on Autism Spectrum Disorder,” Centers for Disease Control and Prevention, accessed November 9, 2022, https://www.cdc.gov/ncbddd/autism/data.html.
[ii] Tom Chivers and David Chivers, How to Read Numbers: A Guide to Statistics in the News (and Knowing When to Trust Them). (London, Weidenfeld & Nicolson, 2022)., pg. 86
[iii] Ibid., pg. 84-85
[iv] Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition (DSM-5) (Arlington: American Psychiatric Association, 2013), pg. 50-59
[v] Lisa Jo Rudy, “Autism in Girls: Signs, Symptoms, and Underdiagnosis: Autism in Girls May Look Different From Autism in Boys,” Very Well Health, October 9, 2022, https://www.verywellhealth.com/signs-of-autism-in-girls-260304
[vi] Chivers and Chivers, pgs. 84-86
[vii] Ibid., Pg. 2
[viii] Rudy. The article suggests that one of the reasons girls are less frequently diagnosed is due to their ability to mask symptoms.
About the Author
Becca Hald
Becca is an ordained Foursquare minister, serving as the Online Community Pastor at Shepherd's House Church. She has over twenty-five years of leadership experience both inside and outside the church. Becca has served her community in many capacities ranging from Administrative Assistant and Children’s Ministry Director to Secretary and President of multiple school organizations. She and her husband, Andrew have been married for over 25 years. They have two adult children, Drew and Evelyn. Her great passion is to equip others, to raise awareness about mental health, and to help reduce the negative stigma surrounding mental health issues. In her free time, she loves going to Disneyland, reading, sewing, and making cards.9 responses to “Statistics Do Not Tell The Whole Story”
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As a therapist I applaud you for taking the steps that you took to make sure your children had the help they needed. Week after week you amaze me as you testify about the goodness of GOD. Be blessed.
Thank you my friend. 🥰 God is good and I am grateful for all He has carried me through.
Becca,
GIRL!!! You did some work here!! I applaud you!! Look at all your sources! The beautiful thing about this -this is all fodder for your research/NPO!! Good going. You will have this ready at your finger tips for NPO work.
This quote is fantastic, nails what you’re saying to the target
“They also remind us that statistics are more than numbers on a page. Numbers “can go wrong – and give misleading impressions. But along the way we will need to remind ourselves that those numbers stand for something. Often they will represent people, or if not people, then the things that matter to people.”[vii] ”
You do a lot of research in this area of autism. Have you found a reliable source to turn to with current/updated numbers? I hope you can turn to sources that will give you accurate data.
I love getting to know you. Thank you for sharing personally about you mother’s journey.
Thank you my friend. I love getting to know you as well. I have quite a few resources just from years of being a mother. I borrowed the DSM-5 book from a friend who is a therapist when I wrote a paper several years ago on Mental Health and the Church to present at a conference. She told me to keep it for my ongoing research. I love collecting books!
I think the CDC source is the best source for current numbers that I have seen. The Autism Society cites the CDC on their website for prevalence information. However, as I noted, these numbers show an increase of diagnoses, but that does not necessarily indicate a similar increase in cases. My son likely would not have received a diagnosis of autism ten years prior. I have also seen that financial resources impact diagnosis. I have friends with children younger than my son who did not receive “autism” as the diagnosis from the Regional Center even when their children presented similarly to my son. I believe this was because of a lack of resources and funding. They had to fight for a diagnosis and pay for testing out of pocket to get the same diagnosis and resources that we received. So many variables go into these statistics, it is hard to know what to trust.
Becca,
As I read your post I literally had tears. A mothers love is so great. We would go to great lengths to make sure that our children are set up for success.
Our children are not just a number or a statistics. However we can use their specialty to empower them by leveraging like minded and similar suited individuals to help them understand themselves. They are not alone, and they shouldn’t ever feel alone.
My prayer for your children, as well as mine and others is that through the numbers they will continue to find representation. They will find answers for healing, and understanding. Through numbers increasing, awareness will continue to increase and therefore research will show medical breakthroughs!
What is something that we can support you and your kids as a cohort?
Thank you so much Alana. 🥰 The increase in diagnoses has definitely helped with representation, understanding, and awareness. My prayer is that this will continue to grow. I remember a number of years ago I was at Disneyland and stopped to talk to a teenage boy. He was clearly on the spectrum. I gave him my attention and spent maybe five minutes with him. I cannot remember the conversation, but what seared into my memory was his mother saying thank you as we said goodbye. How many people had this boy tried to talk to who just ignored him, belittled him, or worse that his mother felt the need to thank me for stopping? It broke my heart. May I never be too busy or self focused to stop and give someone my attention!
Just last weekend (again at Disneyland!) I was on the tram in front of a young boy with autism. We had a great conversation. His mom felt the need to share with me he is on the spectrum. My hope and prayer is that we will get to a place where that is not necessary, where a mother can feel confident and comfortable without having to feel the need to explain “odd” behavior like her son not looking me in the eye. We have come a long way from when my children were young, but we still have far to go.
As for support, prayer is always appreciated. My son lives up in Oregon on his own and doing amazing. God has answered our prayers for him in ways I could not even imagine. My daughter is doing well in her college classes, but struggling with social anxiety, amplified by two years of isolation due to Covid. She still needs quite a bit of support from us, which is totally understandable. Thank you my friend.
Hi Becca,
Thank you for sharing your story of your two incredible children. Your story is a great depiction of not reading numbers and immediately thinking “the sky is falling.” Yes, the increase in number of people diagnosed with autism has increased due to the change of what autism could look like in the DSM. Great job Becca!
Thank you David. I agree, my children are incredible. I am one proud mama.
Fantastic post, Becca. It was multi-layered with thought-provoking material and resources and a personal touch that made it a great read.
This quote really caught my attention, “Are the number of cases on the rise or are we just being more diligent about diagnosing children with autism?” How would you answer your own question? Do you think there is a long way to go or are you pleased with the progress in this area, in regard to diagnosis and criteria for diagnosis?
Thanks!