What are some reasons why an autism evaluation is delayed? <\/h2>\n
One question, infinite answers. Before we dive in, feel free to check out my previous posts on Signs of Autism in Toddlers Age 1 and Up<\/a>, and Diagnosing Autism at One-Year-Old<\/a>.<\/p>\n Infinite reasons, yes, but a very very short list would include: stigma<\/a>; lack of access to medical care<\/a>; wait lists<\/a>; finances<\/a>; language barriers<\/a>; <\/a> an initial diagnosis of another issue<\/a>; the autistic individual \u201cmasking\u201d their behavior to appear more neurotypical<\/a>; or having your concerns dismissed by a medical provider (or other individuals)<\/a>. <\/p>\n So\u2026lots of reasons, that can vary from person to person. Many times, an autism evaluation is delayed from a combination of these causes. This post will only deal with a couple of these issues that Lina and I have personally experienced, and I encourage you to read up about the other reasons as well!<\/p>\n For us, even though we were *extremely fortunate* to be in a position for an early diagnosis, it was not an easy road. Whenever I tentatively mentioned any concern about Lina\u2019s development (without even mentioning or thinking about autism), I heard the usual, \u201cShe\u2019s fine, kids develop at their own pace, you\u2019re reading too much stuff on the internet.\u201d Yes, of course kids \u201cdevelop at their own pace,\u201d and of course Lina was \u201cfine,\u201d but she also happened to have significant delays in various areas, and those delays were starting to add up to challenges for her and for us. I didn\u2019t want platitudes. I wanted answers. Was I being hysterical? Was there a medical reason behind Lina\u2019s differences? And what could I do to support her? I can remember so clearly certain moments that made me realize, again and again, that Lina was different from her peers: seeing another kid in her daycare nonchalantly feed herself with a spoon when Lina struggled to swallow solids a tiny portion at a time; watching kids younger than Lina wave hi and bye to their parents, while Lina didn\u2019t seem to notice a rotation in the guard; worrying that Lina\u2019s hands would be crushed as she tried to crawl around a room where the other kids her age were walking, running, or generally stomping without compunction.<\/p>\n But don\u2019t get me wrong, it\u2019s hard to ignore the well-meaning advice of family and friends. I thought maybe they knew better, since I was a first-time mom with little basis for comparison. All I had to go on were the CDC milestones\u2013and yet when Lina didn\u2019t reach those milestones, even her pediatrician said, \u201cWait and see.\u201d When she was nine months old and checked many of the boxes for early signs of autism in a toddler<\/a> (didn\u2019t have any form of communication, didn\u2019t babble, didn\u2019t point, didn\u2019t respond to her name)\u2026wait and see. Meanwhile I looked at babies her age and what they were doing, and I couldn\u2019t help but think that either I was a terrible mom or Lina was\u2026different. But who was I? Just a new mom. Doctors know better, right? <\/p>\n Luckily, my sister, who also happens to be a pediatrician, gave me better advice: \u201cIf you\u2019re worried, call Early Childhood Intervention and ask for an evaluation.\u201d Never having heard of this group before, I asked a million questions, including, \u201cWhy have I never heard of this group before?\u201d So if you aren\u2019t familiar with them either, don\u2019t feel bad\u2013you\u2019re not alone. Here\u2019s a link to more information by state<\/a>. The important thing is they will evaluate your kid if they are under three, at no cost to you, to see if they have developmental delays in a bunch of different areas (social, communication, motor skills, etc.). If your child meets a certain threshold in their delays, they qualify for therapy services, and parents\u2019 costs are either covered or on a sliding scale based on income. Early intervention will not dismiss your concerns without taking the time to actually evaluate your child. <\/p>\n If your child is older than three, and you\u2019re struggling with your doctor or with the doubts\/\u201dreassurance\u201d of family and friends, trust your gut. Find a new doctor if you have to. Even if it turns our your child is not autistic, you will have more information than before. And that is invaluable.<\/p>\n But let\u2019s circle back to another pesky reason for a delayed diagnosis: wait lists. The wait list for an ECI evaluation was almost two months in Texas. When Lina was finally evaluated, we learned her delays were significant enough to qualify for some therapy. Therapy took another few weeks to coordinate. We thought we were on the right path to get Lina the assistance she needed. Then a few MORE weeks later, the ECI coordinator on Lina\u2019s case gently explained that she thought Lina could benefit from another evaluation, this time for autism, which ECI was not qualified to diagnose. We\u2019d have to get on a different wait list, and this time, the list was even longer. Even in a major US city, with access to top quality medical care, you could wait a year OR LONGER to see a doctor qualified to diagnose autism. <\/p>\n It\u2019s insane. <\/p>\n Nonetheless, I put us on every wait list in the area, while continuing to question my own sanity. Sure, she met nearly all the signs of autism on the CDC list<\/a>. Sure, ECI told me she should be screened. Sure, my motherly instincts told me Lina was different. But what if I was being an overprotective helicopter\/tiger\/bulldozer mom? What if everyone telling me to \u201cwait and see\u201d was right? Was I going through all this drama over nothing?<\/p>\n In spite of all the signs telling me to go ahead with an autism evaluation, I almost let myself be talked out of it. In fact, the only thing that convinced me to go forward was a Facebook discussion. I had recently joined a group for moms of autistic children\/children awaiting evaluation, etc. After pretty much deciding I was being hysterical and there was no need for an autism evaluation or screening, I posted in the calmest language possible, \u201cHey my kid is a little over a year old, and ECI says we should screen for autism. Everyone else thinks I\u2019m nuts. Thoughts?\u201d<\/p>\n The comments on this post were universal and said, in summary, \u201cUm, why not screen? Get an answer and ignore the haters.\u201d<\/p>\n Wow. To have a level-headed and open-minded response to the potential autism question\u2026from moms who had been there\u2026was liberating. No judgment. No shame. No questions about my parenting abilities. Ladies and gentlemen, this is why it\u2019s helpful to talk to people who have been in your shoes.<\/p>\n If you\u2019re a concerned parent or guardian reading this post, please take these words to heart: there is absolutely no harm to come from putting your name on a waitlist and seeing a doctor\/qualified medical professional for an autism evaluation. There is no need to \u201cwait and see.\u201d If you were waiting for a sign\u2026this is it:<\/p>\n If you found this information helpful, you can subscribe for blog updates below, or follow along on Instagram<\/a>, Twitter<\/a>, and Facebook<\/a>.<\/p>\n Subscribe below to be notified when new posts appear!<\/p>\n<\/blockquote>\n<\/figure>\n <\/p><\/div>\n![\"\"](\"https:\/\/i0.wp.com\/thekidsarenotonfire.com\/wp-content\/uploads\/2022\/04\/Jafar-list.gif?resize=433%2C333&ssl=1\")
<\/figure>\n<\/div>\nConcerns about autism are dismissed by medical providers or other individuals<\/h2>\n
Wait lists cause delays in autism diagnosis<\/h2>\n
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