My Plea to Parents Worried About the Autism 'Label'

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daughter playing with pony toys
My daughter

I’m directing this post to the parents of children who are concerned by some of their children’s “quirks,” and after research are thinking they may be autistic… but are hesitant to get them assessed and diagnosed for fear of what possible effect a label on their children’s behavior may have on their lives. To the parents who love their children and are concerned and worried and feeling overwhelmed and a little lost.

Let’s break it down.

1. It’s totally normal to feel grief over your child not being “normal.”

Every parent wants their children to develop alongside their peers and achieve the same milestones at the developmentally “appropriate” time. No parent likes to watch their child struggle each day with daily tasks. It’s OK to feel sad. Going through the stages of the grief cycle is normal when it comes to having your perception of reality changed. But please don’t let this be the reason you don’t seek further support for your child.

2. Your child probably already knows they’re different to their peers.

Even from a young age, children are perceptive and incredibly bright little creatures and pick up differences in how they may operate in comparison to their peers. They may note that they get affected by certain things but their friends don’t. Having a diagnosis gives a child a sense of identity and awareness of self. It gives them tangible reasons to understand their behavior and preferences. It removes blame – they’re not acting this way by choice or for attention; it’s simply because their brains work a little differently.

3. Don’t keep waiting or hoping they’ll “grow out of it” – act now.

If you are noticing your child has behavior challenges or you’re able to identify several little “quirks” they have, but you’re hoping they’ll just magically grow out of it, please just be brave and seek support. The sooner a diagnosis can be made, the sooner support can be given.

4. Labels are life.

So you’re scared of your child being pigeon-holed into a box, yeah? You don’t want them to be limited on their chances in life? I hear you. Except labels are everywhere in life: noisy, loud, slow, small, big, annoying, quiet, shy, aggressive, anxious, extrovert, introvert. Labels describe a behavior, not a whole person. They can also be incredibly freeing and liberating to a child because they may be the pathway to support and understanding from their community. Sure – there may be judgment. But ignorance is everywhere, and it’s unavoidable. Don’t let it be the reason you don’t seek further assistance for your child at the most crucial and beneficial time.

5. What does it change?

It’s likely your child has been the way they are since birth, and you’ve loved them this way and you will continue to. Having a diagnosis label attached to them isn’t going to magically alter their personality or change who they are. Personalities don’t suddenly change when you get a diagnosis. The contrary often happens: their understanding of self and others’ understanding of them broadens and stretches. Your child is always going to be your child. The things you love about them won’t go away when they’re diagnosed. But the things they struggle with; well, you may find a light suddenly goes on in an otherwise darkened room, or a sense of direction is given when you’re feeling directionless.

6. Look at the big picture.

If you don’t think seeking a diagnosis is going to benefit your child now, can you take a look into the future? It’s really hard to tell what may present as possible hurdles to your child in as little as weeks, months or even years. Accessing support as soon as possible means your child benefits from learning coping strategies, techniques, skills and tools they can then put into place for years to come. What might look like some few minor issues now can quickly develop into more complex issues down the track; and it’s not something you can really predict. It’s better to be on board and informed as soon as you can, to support your child and their future development.

It’s totally understandable to be confused and a little fearful of an uncertain road. But you’re not walking it alone – many parents have done so before, and there is a great amount of support out there available to you. So coming from one parent who wishes with all her might she had deliberated less and acted sooner, I ask you: be brave for your child. It’s OK. It will get easier, I promise. Just take the first step.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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How Communities Can Shift From Awareness to Acceptance of Autism

April is quickly approaching and in addition to being known for its “showers that bring May flowers,” it’s also when there’s a national spotlight on autism. Autism Awareness Month in April is not without its controversies as many in the autism community feel it’s time to shift beyond the public’s awareness and emphasize acceptance. I mean, after decades of a nationwide effort in April, isn’t everyone “aware” of autism by now?

Contributor Jodi Murphy for Autism Awareness Month

What I like about a special month devoted to autism awareness is that the media will more likely cover topics related to autism, so we’ll have more of the mainstream’s attention. We have a window of opportunity to move the public past awareness into a greater understanding of autism. As a community, we can cause the shift and create the momentum that will bring about more compassionate, accepting communities in which we live.

When I saw a presentation by Holly Robinson Peete, Hollywood’s most notable autism advocate, she said something that continues to resonate with me:

“I urge any of you who have any kind of platform of any size to spread awareness about autism or special needs and how valuable our children are — it could be at a school function, a church meeting, a community event — do it so there’s always hope for them.”

I really wanted to do something actionable this coming month to make it easier for myself, other parents and educators to have conversations or lessons around autism. And then I had an idea. For the last couple of years, I’ve been collaborating with some amazing autistic adults who have expertise in filmmaking, writing and voice over. I’ve worked in partnership with clinical advisors and educational specialists — even a former Disney feature film’s illustrator.

Together we’ve created children’s stories and pop culture webisodes focused on the topics of autism. I pulled everything together — children’s comic e-books and apps, Bluebee TeeVee Autism Information Station webisodes and the curriculum, activity and episode guides — and added PowerPoint presentations, videos and student handouts into “Autism EDU,” a collection of educational tools for everyone who wants to spread autism awareness/acceptance in their own communities.

So share one of our Mighty League stories as an opener that leads into sharing your child’s story:

Or teachers, what about reading a story for language arts and include social and emotional learning, too?

Why not use one of the webisodes to help educate a family member so you can have a deeper discussion?

My hope is that this sparks some ideas for you. We don’t need to wait for big organizations to speak for us. We can cause the shift to happen. No action is too small or insignificant because together we can create a tidal wave of change.

My son and I will use these tools when we’re talking to students in a few classrooms and participating in Fullerton’s Mardi Gras for Autism on April 16. We’ll let you know how it goes! Likewise, we’d love to know about what you do this April to move your community from “awareness” to acceptance.

Find all the Autism EDU awareness/acceptance tools here.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Mom Has Brutally Honest Response to Portrayal of Autism in New TV Series

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“The A Word,” the hotly-anticipated U.K. television series about a boy with autism and his family, premieres Tuesday on BBC. While a number of media outlets have been lauding the program for tackling a subject seldom addressed by the entertainment industry, calling it a “beautifully believable drama,” one mom has spoken out about the show’s portrayal of autism.

Karen Rockett, whose 6-year-old son Elwood has autism, wrote a brief letter to the Mirror, stating that she will watch the show, but she doesn’t exactly relate because her son is nonverbal. She goes on to point out that children like her son, who may never live independently, likely won’t ever be the subject of such shows because they don’t “make for good television.”

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Rockett wrote:

I will definitely be tuning in to watch The A Word tonight ….even though I know it will probably make me cry.

For those of us whose children are not at the more ‘glamorous’ end of the spectrum, those portrayals of quirky, cute little geniuses are miles away from our day-to-day experiences.

My son doesn’t talk at all and he certainly doesn’t memorize and recite reams of information.

He attends a special school, has a developmental age of two and will never live independently.

But then I don’t suppose the non-verbal auties make for good television.

Who wants to watch a TV drama about a teenager still in nappies banging his head on the floor and living in residential care because his broken parents can’t cope and split up years ago?

No, I thought not.

The first episode of “The A Word” airs on BBC One on Tuesday March 22, 2016. You can read a review of the first episode from an autistic woman and her dad here.

Will you watch?

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9 Things I Have Learned About Autism From My Son

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I wish I could have found this article when my son was diagnosed with autism.

I wish someone could have been honest and blunt.

I have decided to share nine things that I, as a parent, have learned about autism. Everything in this list is formed from my own opinion. I understand if you do not agree!

1. There is no cookie cutter form for autism. Just like every “normal” person is different, so is every autistic person.

2. Autism can affect every moment of your life.

3. Autistic kids, even children who are nonverbal, are often more aware than they may seem. It may seem like they are not paying attention when, in reality, they are hanging on your every word.

4. People may stare at your family. Why does everyone stare? Are they curious? Are they being judgmental? I have just started staring right back.

5. My son has learned from various sources that he can use his autism as an excuse for poor behavior. We do not accept this. At home, he is treated like everyone else. Autism is not an excuse.

6. We have high expectations of our son, and we are going to do whatever it takes to help him get there.

7. A lot of kids with autism fixate on things and “obsess” on every aspect of these things. I know way more than I need to know about Super Mario, the Titanic and submarines lost at sea.

8. Just because my son is labeled as “high-functioning” and verbal, doesn’t mean we do not have challenges. We do.

9. There is not enough autism awareness. Too many people only have a vague notion of what autism is, and it is usually completely off. The spectrum is large, and there is so much that we do not understand.

Autism has become a part of my life.

I wouldn’t change it.

I love my boy with all of my heart.

I love everything that he is, and I love what he has taught me.

A version of this post appeared on themadmommy.com.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I Love the Moments When My Daughter With Autism Doesn’t Want to Hold My Hand

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Like many mothers, holding my little girl’s soft, ever-warm, pudgy hand in mine has always been a wonderful moment of connection. Those little digits, never far from mine, help when the walk gets too long, the road gets too noisy or just for that little bit of reassurance. From back ache from the height difference of walking with a toddler, to the “swing me, swing me” stage, to the steadying hand when learning to ride skates, that handhold has always been beautiful.

Added to this, the calm moments at bedtime when your sleepy little girl lies there yawning and drifting off while you stroke her hair rhythmically or gently brush the back of her hand, and you feel the grip loosen as she finally nods off. I feel it epitomizes childhood, reliance, peace, comfort and contentment.

I always knew one day the handholds would diminish, but I didn’t expect that to be for sensory reasons. The comforting stroke of her hair can be a huge irritation, the passing hug a meltdown inducer, and the hand-holding rejected when the mood takes her (Daddy gets no hand holds unless he has gloves on because he has hairy hands!). But it is not always this way, and I think it is brilliant that she is starting to understand her feelings and how she reacts to touch and sounds and smell, etc. She is starting to realize that at certain times, that stroke is not a comfort, it is an irritant — and no matter how hard it is for me to take, I know by her telling me to back off, she is in fact growing in knowledge and confidence with her autism spectrum disorder.

She has always loved soft toys as long as they have a smiley face, fleecy things, snuggly blankets, laying her head on the dog’s velvety ears — those things are still a huge comfort to her. She piles these fluffy creatures around her at nighttime, extended families of bunnies, large-eyed pandas, neon build-a-bears who snuggle around her, protecting silently, soothing motionlessly and comforting telepathically.

So at bedtime, she is wrapped in her fleecy star blanket and tucked in tight, snuggling her favorite toy, which has been her companion since birth, and lying peacefully while I read a bedtime story. I keep a hand there, on the bed just in case she reaches for it — and sometimes she does, hugging my arms so tight that it feels like she is a little curly-haired toddler once more. I love those moments, but I also love the moment when she is confident to know that the stuffed toys are better than my hand at that moment in time. On those nights, I don’t feel bad. I still kiss her forehead, I still whisper, “Night night.” I just ensure that the whippet sits on the sofa next to me so I can stroke his little head instead.

Follow this journey on Coloring Outside The Lines.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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12 Things I’ve Learned From Life With Autism and Mental Health Issues

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I have a diagnosis of autism and atypical schizophrenia. I have been dealing with my illness for as long as I can remember and my autism since I was born. These are some things I have discovered along my mental health journey which may assist others.

1. It can be common for people on the autism spectrum to also experience mental health issues. Mental illness may present differently in a person on the autism spectrum than in others. If you have a mental illness and autism spectrum condition, it is important that you, those who care for you, and your treating doctor and other health workers understand how your mental illness impacts you and how they can help.

2. Many people on the autism spectrum have something called alexithymia (also known as “emotion blindness”). This means they can struggle to contact the emotions they are experiencing. They might be extremely depressed and not realize it, instead thinking they feel “bad” but being unable to pinpoint how serious their low mood is.

3. As a person with mental illness and other issues, I’ve learned it is important to take responsibility for your own future. Nobody else can change your life for you. I’ve found positive change can only happen from the moment at which you decide to make it. You really can be the CEO of your own life. You are in charge of the decisions you make and the direction your life takes.

4. You are not alone — many other people will be experiencing similar things to you. You can meet others with similar experiences through getting involved in the autism and/or mental health communities. This can help you to value and respect yourself as a person with autism and a person with mental illness, in addition to connecting you with like-minded people. There are many groups on social media which may be of assistance.

5. Make use of difficult experiences by viewing them as teachable moments. This doesn’t mean to minimize or discount your negative experiences. Instead it means to reflect on any difficulties you have had and then ascertain what you have learned from them. This is a good way of building your resilience.

6. Independence does not mean doing everything by yourself. You can access support and be independent. Everyone needs help with something.

7. When life was very difficult, I reminded myself that “this too will pass.” I’ve found this is a helpful attitude and can be used when you are experiencing a mental health crisis.

8. Recognize that people with autism and people without autism tend to communicate differently. This does not mean that one or other style is “right.” Each style is valid. But be aware of this when dealing with non-autistic mental health clinicians, as they may be misinterpreting what you say. It can help to discuss this issue with your doctor or other mental health professional.

9. If you use a psychologist or psychotherapist, you may need to shop around to find one that works well for you. Understand there are different therapy models and some will be more effective than others. The relationship between you and your therapist is often more important than the kind of therapy model they use. Try to find a therapist who has some knowledge about autism and/or is willing and able to learn.

10. You may be prescribed medication for mental health issues. Remember that medication is not “one size fits all.” It may take a few attempts to find the medication that works for you. Be patient, because getting the right can one usually provide some good results. Record any side effects or anything else you notice that concerns you while taking medication and report back to the doctor who prescribed it. Even if you think you know best, discuss any changes you want to make to your medication with your doctor before acting on them.

11. Do what works for you. Find strategies to address the different challenges your illness and/or your autism present. It can take a while to develop effective strategies for everything you experience. See it as an ongoing learning process. You will build wisdom by using each method or strategy.

12. Finally, remember that you are amazing. You are strong and have been through some of the most difficult situations with a 100 percent success rate. Acknowledge your efforts and reward yourself for good progress.

still from film of woman smiling
Jeanette.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

Follow this journey on Jeanette’s website, and learn more about her new book, “The Guide to Good Mental Health on the Autism Spectrum,” here.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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