{"id":3209,"date":"2024-07-10T12:18:28","date_gmt":"2024-07-10T12:18:28","guid":{"rendered":"https:\/\/www.autismconnect.com\/blogs\/?p=3209"},"modified":"2025-08-02T06:34:47","modified_gmt":"2025-08-02T06:34:47","slug":"research-research-research","status":"publish","type":"post","link":"https:\/\/www.autismconnect.com\/blogs\/research-research-research\/","title":{"rendered":"Research, Research, Research!"},"content":{"rendered":"

Most of us parents and caregivers of autistic children are fierce advocates for our children. We relentlessly pursue services and supports based on their needs, we celebrate their successes and capabilities, and we never give up.\u00a0 But most of us never imagined how much work it takes and how difficult it can be at times.\u00a0 I certainly didn\u2019t have a clue!<\/span><\/p>\n

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Part of being a fierce advocate involves conducting some seemingly boring tasks.\u00a0 These tasks are critical to success\u2026and one of the most important of these is research.\u00a0\u00a0<\/span><\/p>\n

Embrace the power of research!\u00a0 Be systematic. Knowledge is key not only to understanding and finding the right resources for our kids but becoming an effective advocate.<\/span><\/p>\n

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Although my son Andrew and his younger sister Ainsley weren\u2019t diagnosed with autism and multiple, complex co-occurring conditions until they were 9 and 7 years old, respectively, both my husband and I knew in our guts that something wasn\u2019t right from almost the time they were born.\u00a0 Andrew\u2019s hands and feet moved in constant circular motion, he never gurgled or talked to himself in his crib, and he lacked any self-control when it came to eating.\u00a0 And as he started school, we witnessed some regressive behavior:\u00a0 he could no longer maintain eye contact or handle unplanned changes and transitions in his day-to-day activities.\u00a0 His almost daily meltdowns were frightening.\u00a0 Ainsley, too, exhibited worrisome signs and symptoms, ranging from her inability to read social cues and her tendency to blurt out inappropriate comments to some sensory sensitivities and extremely high anxiety.<\/span><\/p>\n

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Yet every time I approached our doctor, he told me to calm down.\u00a0 \u201cLook\u201d, he said, \u201cThe children have learned to read and write with their peers and are social and outgoing.\u00a0 They\u2019re just a bit sensitive.\u00a0 This will pass.\u201d\u00a0 Essentially <\/span>I<\/span><\/i> was the problem (sound familiar?)!<\/span><\/p>\n

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But I trusted my gut, and I refused to settle.\u00a0 I dove into research to look for answers, although no one seemed to be able to give me a name for the children\u2019s behaviors.\u00a0 In addition to searching the Internet, I spent days in libraries and talked with as many professionals, associations, and agencies as possible.\u00a0 It was overwhelming at times.\u00a0 But if you don\u2019t persevere, who else will advocate for your child?<\/span><\/p>\n

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As I write in <\/span>Hold on Tight<\/i><\/strong><\/a>, when Andrew and Ainsley were finally fully diagnosed, it was such a relief for me.\u00a0 I didn\u2019t fear the \u201clabels\u201d of autism, Tourette Syndrome, Obsessive Compulsive Disorder, anxiety, ADHD, developmental disabilities, and learning disabilities. \u00a0 Thankfully there were names to their behaviors, and I could begin to find the right help for them.<\/span><\/p>\n

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So back to research, I went.\u00a0 I read every article I could about each of the children\u2019s conditions.\u00a0 I watched videos.\u00a0 My husband and I joined multiple support groups:\u00a0 for autism, ADHD, OCD, and Tourette Syndrome.\u00a0 We bombarded other parents, caregivers, developmental services, and mental health professionals with questions.\u00a0\u00a0<\/span><\/p>\n

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Of course, research can be never-ending.\u00a0 The law of diminishing returns can kick in, and it\u2019s important to recognize when you have done your best.\u00a0 You have to take a breather from time to time.<\/span><\/p>\n

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But it\u2019s important to never completely stop.\u00a0 There are always new findings, medications, therapies, and treatments.\u00a0 Even today, with grown children, I do my best to stay current and keep educating myself.\u00a0 It doesn\u2019t require the same breadth and intensity as my initial research unless new critical information comes up.\u00a0 And there are new challenges to tackle at every stage, whether determining the most effective job accommodations for Andrew or finding a family doctor who can empathize with Ainsley so she doesn\u2019t shut down.<\/span><\/p>\n

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An essential part of my research has always involved looking into each child\u2019s medications.\u00a0 Most of their meds have been prescribed for their co-occurring conditions, particularly for OCD, anxiety, and ADHD, and have been life-saving for my kids.\u00a0 But there can be side effects, sometimes serious ones.\u00a0 Stimulants have caused eating and sleeping problems. They\u2019ve suffered from nausea, dizziness, heart palpitations, headaches, and stomach aches at times.\u00a0 Recently, we made the decision with Andrew\u2019s psychiatrist to eliminate one of his ADHD medications that none of us believes is benefiting him.\u00a0 As parents, we have a responsibility to understand our children\u2019s medications, weigh the risks against the benefits, and observe changes in their behavior.<\/span><\/p>\n

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I have also learned that although the Internet is a crucial source of research, it is critical to verify information with expectations and learn what to ignore.\u00a0 The same goes for social media. The dire stories and warnings that some people spread, as well as the promotion of certain alternative treatments and diets, can be both alluring and scary.\u00a0 I\u2019m a strong believer in trying anything that may help my children, but a number of \u201ctreatments\u201d espoused on the Internet not only make no sense to me but can be harmful, at least to my children.\u00a0 Certain articles, blogs, and influencers advocate that medications should not be given to autistic children and that they can be \u201ccured\u201d in other ways.\u00a0 Some believe that the incidence of autism is linked to vaccines, although those so-called studies were debunked years ago.\u00a0 Others espouse that autism can be cured by ridding the body of toxins.\u00a0 I\u2019ve heard it all.\u00a0 But the medical and scientific articles I have read and the professionals with whom I have spoken have consistently disputed any link between these claims and autism.\u00a0 They even note that a few of these therapies can even lead to dangerous side effects, such as kidney damage.\u00a0 Autism cannot be cured.\u00a0<\/span><\/p>\n

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I empathize with parents and caregivers who are overwhelmed, frightened, and frozen.\u00a0 I\u2019ve been there.\u00a0 But please don\u2019t give up.\u00a0 Keep digging for information.\u00a0 Remember that knowledge is power: research not only broadens our understanding of the complexities of autism, as well as of our children\u2019s associated conditions, but it allows us parents and caregivers to make more informed decisions about our children\u2019s care.\u00a0\u00a0<\/span><\/p>\n

Persevere.\u00a0 Be relentless.\u00a0 Hold on tight.<\/span><\/p>\n

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Most of us parents and caregivers of autistic children are fierce advocates for our children. We relentlessly pursue services and supports based on their needs, we celebrate their successes and […]<\/p>\n","protected":false},"author":64,"featured_media":3211,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[401,235,165,146,331,413,101,246,104,406,216,71],"tags":[129,86,274,498,196],"_links":{"self":[{"href":"https:\/\/www.autismconnect.com\/blogs\/wp-json\/wp\/v2\/posts\/3209"}],"collection":[{"href":"https:\/\/www.autismconnect.com\/blogs\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.autismconnect.com\/blogs\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.autismconnect.com\/blogs\/wp-json\/wp\/v2\/users\/64"}],"replies":[{"embeddable":true,"href":"https:\/\/www.autismconnect.com\/blogs\/wp-json\/wp\/v2\/comments?post=3209"}],"version-history":[{"count":7,"href":"https:\/\/www.autismconnect.com\/blogs\/wp-json\/wp\/v2\/posts\/3209\/revisions"}],"predecessor-version":[{"id":3227,"href":"https:\/\/www.autismconnect.com\/blogs\/wp-json\/wp\/v2\/posts\/3209\/revisions\/3227"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.autismconnect.com\/blogs\/wp-json\/wp\/v2\/media\/3211"}],"wp:attachment":[{"href":"https:\/\/www.autismconnect.com\/blogs\/wp-json\/wp\/v2\/media?parent=3209"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.autismconnect.com\/blogs\/wp-json\/wp\/v2\/categories?post=3209"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.autismconnect.com\/blogs\/wp-json\/wp\/v2\/tags?post=3209"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}