To the Parent of an Undiagnosed Autistic Girl

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Dear parent/carer,

I’m writing to you in my capacity both as the parent of a little girl awaiting assessment for autism, and as an adult autistic woman, and one who has spent most of her life, until the age of 36, undiagnosed.

I know you’ve been wondering about your girl. Perhaps someone has said something – a family member, perhaps; a friend; a teacher. Or, maybe, you’ve been thinking for quite some time that your child might be a little…different. “Autism” is the thing that’s been suggested. And you’re wondering.

Perhaps you’re wondering about the formal assessment process. Perhaps you’ve already begun to get things moving, or maybe you’re little further down the line, and it’s dawning on you that the whole thing is far more arduous than you’d ever imagined. I get that. Totally. My family is there too.

And so, you’re thinking you might not go through with it. After all, she seems to be doing fine right now. Yes, she’s a little on the “quirky” side, but on the whole, she seems to be coping; you’ll just leave things as they are. Besides, you don’t want to “label” her unnecessarily.

Thing is, though, we’re always labeling people.

Clever. Talented. Bright. Inquisitive. Curious. Compassionate. Kind. Funny. Sociable. Chatty. Tomboyish. Earnest. Bookish. Quirky. Eccentric. Precocious. Gifted.

Those don’t sound too bad, do they? Sure, you might be more keen on some of these “labels” than others, but on the whole, there’s not a lot to worry about here.

What about these?

Bossy. Opinionated. Controlling. Aloof. Selfish. Rude. Shy. Anxious. Naughty. Irritating. Antisocial. In your face.

Is it that you don’t want to label your girl, or is it simply that you don’t want to label her as “autistic”?

She’s fine now. She’s coping, as you say. But what about in the future?

As she grows older, other labels might start to creep in.

Withdrawn. Lazy. Lacking in application. Arrogant. Inconsistent. Over-sensitive. Away with the fairies. Disorganized. Teacher’s pet. Uncooperative. Defiant. Difficult. Out of control.

And it might happen that you seek out professional help on behalf of this girl, who may seem to be so brilliant in some ways, but to be struggling so desperately in others. And then, other labels might be used.

Bipolar. Borderline. Obsessive-compulsive. Clinically depressed or anxious. Anorexic. Bulimic. Suicidal.

Some of these will be wide off the mark. Observed autistic behaviors will be wrongly categorized, and a wrong diagnosis applied. And the struggles will continue.

Other labels might be correct. She might feel pain, confusion, frustration, stress, and exhaustion from puzzling over her identity; from trying, or at times refusing, to fit in, in a world which she doesn’t understand and which doesn’t understand her. From the onslaught of overwhelming information and sensory input. From trying to “cope.”

At times she may try to “mask.” And if she does so, sometimes she will do so successfully. And at other times she will get it woefully wrong. And either way, it’ll be stressful to keep up, year upon year upon year.

She might struggle with education and employment.

Or she might still do well in life.

But even if she does, something inside will never feel quite “right.” Something will be missing. The key. The glue. I hesitate to use the words “puzzle piece,” they’re too loaded and emotionally charged for many of us; but perhaps they’re appropriate here. This girl is not the puzzle, but she isn’t getting the full picture. Something that should be identified will not be.

What would happen if she did receive that label, earlier in life? Before so much of life has got in her way, obscured the picture, prevented the right details from coming through?

She would still, of course, find some things easy, and some things very, very difficult. Inside, she’s still the same person, and autism is a huge part of that. And support can be patchy (that’s something of an understatement, really).

And yes, there is stigma attached to the “autistic” label. But there are many of us trying to change that. And, slowly, it is getting better.

But by knowing – fully – who she is, your precious, wonderful girl can start to take ownership of who she is, to embrace her identity. She can work with who she is, rather than against it. By doing so, she can be happy.

If she goes to college or university, her label may help her to access the kind of support with her studies that I could have done with, but never had.

When she’s in employment, that official label will mean she’ll be legally protected, and entitled to adjustments to enable her to do her job to the best of her ability. Understanding who she is might make her less likely to be disciplined for her behaviour, to lose jobs because of her behavior, or struggle on in roles she is unhappy with and finds stressful.

Again, support might be patchy. Really patchy. Her employer might not be among the most enlightened. But an official diagnosis greatly increases her chances of getting any support that is available.

The assessment process might be long. Frustrating. Emotional. The right conclusion might not be reached for some time. But the earlier she knows who she is, the more able she’ll be to learn the triggers for her meltdowns, to understand and mitigate some of the ways her autism makes certain things difficult, and to celebrate the strengths it brings.

There may be times when she rejects her label; and of course, she’s perfectly entitled to do so, as long as that’s her decision.

There will, sadly, also be times when disclosing her label might cost her dearly. And that’s awful. And we must all work to stop that happening. We are doing so. And we’ll keep on doing so until it does stop.

But an official label may give her choices, and an understanding of herself, that she would otherwise be denied. And that’s important. That’s vital, if she is to find her place in the world; if she is to thrive.

And she can thrive.

And whenever she chooses to make contact – to engage – there’s a whole community of likeminded individuals out there who’ll understand her. Who’ll know her struggles. Know where she’s coming from. Who’ll help her, and provide a safe place for her to be herself.

We’ll help you too. We like to share our knowledge and experiences. We’re keen to educate. And we’ll do whatever we can to help you understand. I know you want what’s best for your girl. Of course you do.

And when that girl of yours comes to us, we’ll welcome her. With love, understanding, an open mind, an open heart, and open arms.

Yours,

An autistic woman who understands

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What Happens When My Autistic Child Acts Differently at Home Than at School

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My son is going through a difficult time. This morning my husband carried him to his taxi, kicking and screaming. He was stressed, and I was anxious and worried.

I haven’t called the school and asked if he is OK because I know what they will say: “He is not like that in school.”

Reports from school don’t marry with the child at home at all. In school he conforms, is settled and appears happy. At home he can be violent, unpredictable and highly distressed. The great divide between home and school is a challenge.

When my autistic child behaves differently in school, it makes me feel like I am to blame for his meltdowns at home.

When the common denominator for the challenging behavior and meltdowns is home, it is all too easy for professionals and schools to jump to the conclusion that “bad parenting” is at work. We are accused of lack of discipline, lack of stability, lack of structure, feeding our children the wrong food and even not loving them enough. But just because a child has the ability to “hold it together” in a controlled environment all day and releases the lid on their frustrations, stresses and anxieties at home does not mean home life is awful. In fact the opposite is true. If a child did not feel secure, loved and safe at home, he would likely continue to “hold it together” for fear of releasing his true feelings.

Instead of blaming parents, schools and professionals should be more understanding of the difference between home and school and more willing to listen when a child is behaving differently outside the school gates.

When my autistic child is different in school it makes accessing support challenging.

So many parents know their child needs support but continually get denied services due to presentation within a school setting. It is frustrating and damaging for so many children who put on a front within the classroom but who inside are screaming out for help. The system is loaded too much to the side of education. A referral put in from a school may be readily accepted, yet a parent’s request for the same service is often refused. There is still the assumption that if a child truly had challenges, these would manifest in all settings in the same way. So parents and children get left with little support, and hundreds of children fall through the system because they are “good” in school. Perhaps if schools were more aware of stresses within the classroom environment — like noise, lights and the stress of conforming all day — for children with sensory sensitivities, they may be more willing to support referrals.

When my autistic child is different in school, it appears I am lying.

I have been at the meeting when all eyes are on me, and I know they think I am lying or at best exaggerating. I should never have to do it, but I have resorted to videos and photographs of my child at times to prove what I say actually happened. When I mention strategies we have out in place to help support my child at home and how these are not working some days, people once again assume I am lying. It makes parents feel alone, belittled and unworthy. We already feel like we are failing our child, and those feeling are just made worse when schools give more and more examples of wonderful behavior at school in answer to every incident at home. He showed aggression at home but shared his pencils with another child in school the same afternoon. He had a meltdown over homework yet got full marks in his spelling test the same day. It can be the same child. The sooner professionals and schools understand this, the better for everyone. Have they never been professional and polite to someone in their job only to go home and let off steam by moaning at their husband or shouting at a driver who cuts them off?

Our children are complex and confused, and yet they soon learn where they can “explode” and where they can’t. Sometimes their triggers are only home-related, and this must be accepted. Just because you have never seen the child react like that in the environment you see them in, does not mean the parent is lying.

I know what it is like to see my child happy, flappy and full of delight. I also know how hard it is for him and myself to see him so distressed he cannot control what he is doing.

Put me in different environments, like an interview, a prison, a party or a vacation, and you will see me change to suit my environment. My child on the autism spectrum is no different.

I need people to see this and understand.

Image via Thinkstock.

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Anova's Sensory-Friendly Kits Help People With Autism Avoid Meltdowns at Restaurants

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For families with children on the autism spectrum, dining out can be particularly challenging. To help families have a less stressful dining experience, Anova – a nonprofit for children with sensory and learning differences – is providing restaurants with sensory-friendly kits designed to prevent and minimize meltdowns.

“I came up the idea to launch a sensory-friendly restaurant initiative after hearing so many of the families we serve at Anova express that they often choose not to eat out at restaurants because of the challenges associated with sensory processing disorders,” Jackie Hadley, Anova’s manager of charitable development and community relations, said.

Anova’s kits were designed by occupational therapists and behavior analysts and include noise reduction earmuffs with disposable covers, a wipeable weighted lap pad, a visual motion toy and several sensory, stress, and fidget toys. The kits also include social stories in both English and Spanish and a mood zone chart with pictures for kids who are nonverbal or have trouble communicating. The kits are meant to be used during dining and then returned to the restaurant. All kits are provided free-of-charge to any customer who requests them.

Anova sensory-friendly kit

“Most people know that 1 in 68 children are affected by autism, but not many people realize that 1 in 20 children experience sensory processing disorders,” Hadley told The Mighty. “It is not just those with autism [who struggle] with being overwhelmed by different sensory stimuli such [as] touch, noise, smell, visual, etc., so we wanted to include something that helped in all those areas.”

Since the program’s launch in April, Anova’s sensory-friendly kits can be found at all 11 Mary’s Pizza Shack locations in Sonoma County, California, as well as Steele and Hops in Santa Rosa, California. Participating restaurants receive several complementary kits as well as sensory-friendly training videos and in-person training workshops.

According to Hadley, who checks in with the restaurants once a week, feedback from families and restaurant employees show the kits work. Among the program’s success stories are families coming in regularly for pizza night and special education field trips to Mary’s Pizza Shack.

Anova sensory-friendly kit

While Anova’s kits are currently only available in California-based restaurants, Hadley hopes to expand the program to restaurants beyond the state. “We would be thrilled if any additional restaurants decided to use our sensory kits or implement a program of their own,” she said. “We would be happy to provide the kits, help with sensory training, and offer guidance to successfully run the program.”

So far Hadley has received requests from Australia and the East Coast, as well as special education teachers in the in Novato and Sacramento, California, school districts. “The thought of the program expanding on a national scope and into classrooms would be awesome,” Hadley said. “Since we are a nonprofit, we would need to seek grant assistance to provide kits at that scale. However, we welcome the opportunity to assist whoever reaches out to us and will do what we can to contribute to a positive and collective impact in the world.”

Anova’s kits are not currently for sale, although the organization may make them available for purchase at a later date. Those interested in making their own sensory-friendly kit can learn how here.

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When I Wrote to NBA Coach Steve Kerr After He Wore an Autism Awareness Pin

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My name is Louis Scarantino. I have autism, and I have had a lot of unexpected things happen in my life. This story is about one unexpected thing in particular that happened to me.

During the 2015 to 2016 NBA season, I wrote a letter to the head coach of the Golden State Warriors, Steve Kerr, because he wore an autism puzzle piece pin while coaching a game to support autism awareness. It was the greatest season in the history of the NBA franchise Golden State Warriors, as they broke the win and loss record during the regular season that year. I wrote to him after seeing a photo on Facebook of him wearing the autism awareness puzzle piece pin he wore while coaching a game during autism awareness month, which is in April of every year. The photo was shown on one of the autism pages I follow on Facebook. I felt I had nothing to lose by writing to him, so I decided to take a chance.

I told him thank you for supporting the cause while coaching the team on their incredible season that year. He wrote back to me a bit later saying this. I couldn’t wait to open it. It was a Golden State Warriors card with the logo on it.

Hi Louis,

Thanks for your nice note, I really appreciate it! I am glad to stand up for Autism Awareness and you should be proud of the work you’re doing too. Thank you for supporting the Warriors!

All the best,
Steve Kerr

White card with Golden State Warriors logo (a yellow bridge over a blue background) on it

Handwritten note from Golden State Warriors Coach Steve Kerr

I was grateful to get a response from a famous person I wrote a letter to regarding the cause. It was the first time in my life that I ever received a response after writing a letter to a famous person. It felt like there are people in sports that don’t only care about glory and money. Some care about fans, causes in the world, and other things too. It also meant a lot that the response was handwritten instead of typed and signed at the end. It made me feel like it had a lot of meaning when he wrote it. I never expected to receive this, and this is actually the third time in my life that I’ve had a moment involving a famous person. I’m telling other people with autism to reach out to the people you admire. They might write back and give you a response I got.

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To Employers Interviewing Job Candidates on the Autism Spectrum

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Dear Employers,

Employment is a key topic in our autism community, especially since young adults with autism have “lower employment rates,” according to an NPR story.

Many of the young adults who I know are highly intelligent and could succeed in the workforce, but sometimes they face challenges when it comes to social and interpersonal skills.

One of those challenges starts with the first time you meet with a prospective employer during a job interview. For me, this is often the most challenging part of finding a job as a person on the autism spectrum. Having to maintain eye contact for a long period of time made me feel extremely anxious, and sometimes I froze during a question I didn’t anticipate.

I’ve had other interviews where there were multiple people in the room interviewing me back and forth. It made me feel like I was being interrogated at times. And don’t even get me started on group interviews with multiple candidates in the room.

While I appreciate that the interview process may help you find the best candidate for openings where communication and teamwork are vital, I think other jobs that are more focused on singular projects may not necessarily need a formal interview.

When I give talks to employers about my personal experiences on finding employment, I often recommend that you conduct a one-day job training session instead of an interview to see if the candidate can actually do the job. So instead of having candidates “talk the talk,” so to speak, they can actually “walk the walk” to show you why they deserve a shot at your company.

Because at the end of the day, you want to find the best employees possible who will bring the most to your company. If you are reading this letter today, I can tell you that I know some amazing people with autism who can be just that with the right supports. This isn’t something I’d encourage for just your potential employees with autism but for all of your employees as well.

You may be surprised from what you see when you give them this opportunity.

Sincerely,

Kerry

For those with autism reading this, you may not always get the opportunity to do a one-day job training. Because of that,  I recommend you read over this step-by-step guide on how to succeed in a job interview provided by JobTIPS and Autism Speaks here.

This guide will give you a blueprint to succeed on everything from how to
prep before the interview, what to remember during the day of the interview and
the follow-up work you should do after the interview.

For those looking for employment opportunities, Autism Speaks has also started TheSpectrumCareers.com, a new jobs portal designed to help find employment opportunities for those on the autism spectrum.

If I can ever be a soundboard, you can always contact me via my Facebook Fan Page here as well.

This post first appeared on KerryMagro.com.

Lead photo source: Thinkstock Images

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Having Autism, Hating Loud Noises and Being the Loudest Kid I Knew

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Does your child hate loud noises but is also the loudest child you know?

If so you may be able to relate very well to my own personal story of growing up on the autism spectrum.

As a kid due to my sensory issues I would have issues with different sensations and bright lights. The one issue though that topped them all was noise. Growing up in a big city in the tri-state area, noises would always send me into sensory overload.

It could be anything. A car horn. An ambulance siren. Someone talking loudly outside. It didn’t matter.

And when those times would come, especially around the time I was diagnosed with autism at 4, I would scream as loud as I possibly could as a way to cope. Most of the time when I screamed I thought that would make all the noises around me stop. It wouldn’t be until a few years later though that an occupational therapist would help me learn to control my screams and my anger.

Later, when I started school I’d also have a title of being “the loudest kid in school” because of my inability to understand the difference between inside and outside voices. Whispering was a foreign language to me. My whispering was talking normally and me talking normally was speaking with an elevated pitch that would echo around the classroom.

One of my saving graces when I couldn’t understand this was my love of entertainment. Being able to watch films where people were talking softly at one time and loudly at another gave me the opportunity to mirror that behavior. I turned that into a great love for the theater. Roleplaying different scenes helped me find that balance in my own voice. By the time I started doing plays when I was 10 it became second nature.

My transformation from being one of the loudest people I knew to who I am today was created through the supports I was given thanks to my parents and my therapists. I know many children and even adults on the spectrum who still struggle with sensory issues and understanding pitch and tone.

If this is something you or a loved on struggles with, I’d love to suggest theater or music therapy to help. Also consider supports to help someone cope with their sensory issues. This can be anything from social stories to help with transitioning to noise cancelling headphones to help with sounds.

At the end of the day, progress should be our #1 goal. I can project when I need to but am mostly a quiet kid from Jersey today who loves concerts and blasting my music whenever I can with minimal sensory issues.

A version of this blog appeared on KerryMagro.com.

Image via Thinkstock.

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