Many families wonder when and how to approach sharing with their child that they have an autism diagnosis. There are no clear rules on how or when this talk should occur, but there are a few things you should consider:
-Autism is a lifelong condition and may unfortunately impact how others react towards your child. Generally, a person with a diagnosis of autism is already aware of their differences.
-A diagnosis is simply a description of features that are currently present – it may feel more real when a diagnosis is provided, but the symptoms did not appear simply because the “magic words” were spoken.
-A diagnosis can provide you with the language and a framework to consider using to meet any additional areas of need that are present. For example, your child can learn to advocate their needs to their teacher – “I have autism, I feel overwhelmed when there is a lot of noise in the classroom.”
-I, as well as many self-advocates that I have communicated with, have expressed that learning of our autism diagnosis was a relief – it provided us with a clear way of communicating to others what our differences are, which supported us with then advocating for any supports that we may need.
-I am of the opinion that my autism is nothing to be ashamed of. Learning about my autism provided me with insight into who I am so I could best utilize my strengths.
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Once upon a time, my husband and I were afraid to utter the word ‘autism.’ We thought that merely saying the word aloud would make autism a reality for our son, Jacob. Like many parents who suspect or learn their child has autism, we were in denial big time. After denial, we experienced a period of grief. But in time, we realized that whether Jacob had autism or not, our goal as parents was to help him reach his fullest potential and live the best life possible. That’s when we rolled up our sleeves and got busy.
Sharing the News: We began telling our families and friends about Jacob’s diagnosis. Some relatives had questions we couldn’t answer. Some friends wanted to help but we didn’t know how or what they could do. Yet whatever responses we got were almost a relief because they got us openly talking about autism—they got us over our fear. They got us ‘unstuck’ and focused us on beginning to build a support team.
Knowledge is Power: Two seconds after getting Jacob’s diagnosis, we realized that there was no instructional manual that came with it. We were on our own. Scary. My husband and I had zero experience with autism so we had to begin educating ourselves. We did online research, read articles, sought out parent-friendly websites and support groups, and started attending local autism workshops and Milestones’ conference. The one thing we soon stumbled upon was not knowing what information was trustworthy. Would some therapies offer false hope? Be a waste of money? Maybe even be harmful to Jacob? We quickly learned that we should focus on ‘evidence-based’ strategies and interventions only as these were backed by studies and reliable research.
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My name is Sondra Williams, I am a wife, mother, grandmother, national speaker, and advocate for myself and others. Lastly, I am Autistic. Autism does not define me; it describes only a part of me.
During Autism Awareness Month, I pause and reset my thoughts as I begin to digest what awareness means to me in regards to autism. Awareness has been around for many years now, so you would think it would be profoundly understood by now. Yet, that is far from my truth.
There are so many voices with various messages from “Defeat” and/or “Cure Autism,” to highlighting neurodiversity and able-istic viewpoints. I hear the terms over and over of high functioning versus low functioning, adding label upon label to define this complex disability or as some say difference. So, autism awareness becomes a huge question left unanswered; what should I believe and what camp of thinking do I support?
As an Autistic adult who travels to teach and speak, I meet many teens and young adults who simply struggle in regards to self-awareness and self-advocacy. Many have no clue outside of the diagnostic label what autism is and how it affects them. If one does not know how something affects them or have the vocabulary around their disability, how can we expect them to become great advocates? We must empower their voice through knowledge and teach them the vocabulary around their disability.
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As a speech-language pathologist in training, I recognize the importance of self-advocacy. As an Autistic* person and sister of another Autistic adult, I have seen firsthand how safety and happiness depend on it. I spent years watching my brother come home from school hurt, angry, and misunderstood. His self-advocacy, rather than being cherished and honed, was often ignored or even punished. The trauma he endured in these experiences, and my experiences learning to advocate for myself, while riddled with anxiety, have shaped my appreciation of the critical need to honor and promote self-advocacy.
My brother’s diagnostic process followed the usual timeline. My mother and the pediatrician noticed early developmental delays in areas of mobility and speech. He got his diagnosis by age 3 and was enrolled in early intervention. After school each day, I’d sit on the other side of the mirrored-window and watch various professionals work with him. My journey with autism has differed widely from the understood norm, but is not at all uncommon. In kindergarten, I was reading chapter books and already performing in the top of my class. My mother’s ongoing lament throughout my life was that I could be “so good at school, yet so difficult at home.” As it turns out, this holding-it-together-in-public-and-melting-down-at-home routine is common in people whose autism doesn’t present naturally. We have managed to appear “okay” when complete loss of control feels too unsafe. But doing so taxes our nervous systems heavily such that we pay for it later.
For most of my early life, it didn’t occur to anyone, myself included, that I might also be on the spectrum. At school, I was quiet, but quick to learn. At home, I was an unruly brat. My brother was probably the first to realize, though not consciously. We bonded with one another more deeply than with anyone else in this world. During family parties, we have always found where the other was hiding (or crying if we got too overwhelmed) and quietly kept each other company, an unspoken tradition of camaraderie. We would pick up each other’s stims and lift the mattress for each other to go under when we were struggling.
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Milestones Autism Resources is incredibly disheartened to hear of the recent bullying incident at Greenbriar Middle School involving a young boy with autism. Any act of verbal or physical harassment is unacceptable.
Evidence suggests that individuals with autism are highly vulnerable to bullying, with over 60% of children with autism reporting being bullied at some point in their lives. Milestones can provide support to individuals, families, or school teams seeking resources to combat the occurrence of bullying and the emotional trauma that may result.
If you or someone you know is experiencing bullying and is in need of individualized resources, please call the Milestones free autism Helpdesk at 216.464.7600.