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The Moment My Son With Down Syndrome Was Also Diagnosed With Autism

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You walk outside with the psychiatrist into the spring sunshine of the clinic play yard. With all the testing over, what remains now are only the words. You watch your little one pass by sand toys, slide and swings to sit on a sunny patch of concrete.

In typical fashion, he picks up a leaf and begins to shake it back and forth. Back and forth. You take a second to admire his sweet face and the blue eyes that you adore. You hear the doctor shuffle her papers and pivot toward you. You turn as well, keeping your face unruffled and your mouth relaxed. Breathe. You admire her — the ironed white coat, the nice makeup. She looks up from her notes and begins to speak.

But before her words arrive, you blink into the slanting morning sunlight for a split second, and it occurs to you: This is my last second of not knowing. Although, really, you almost do know. You just don’t want to hear her say it.

Definitely do not think of your husband, of your marriage, your other children, of your unfinished dissertation, of the avalanche that feels like it’s gathering right above you. Forget about parent-teacher conferences and kids’ volleyball games and what you were going to make for dinner tonight. It must all wait for now. Do not think about anything but getting through this moment.

Feel the sun.

She has begun: “Our testing process shows that your child has severe autism. His delays are not similar to those that most children with Down syndrome would normally experience.” As she enters the thicket of explanation, you look carefully at her hazel eyes, at her short beautiful haircut, now being fluffed by the San Diego morning breeze. Your eyes move to her medical name badge, and you wonder how this kind of thing is for her, for only the the two of you are present in this weighty moment that will change all the minutes and years that will come afterward. You look at her for what she truly is: the only other witness to the arrival of your changed life.

Her psychiatrist’s manner is steady, even soft. She delivers the news with a practiced, compassionate firmness that suggests many such past encounters. You attempt to follow the direction of her words, which are now traversing alien, mountainous terrain. She briefly describes the methodology of her testing, the results of the classroom observations and what the teachers’ assessments showed.

The voluminous pages of bubbled-in forms that you returned to her last month are acknowledged, as well as the results of his hearing tests. She begins to mention the details that you already know: his inability to imitate others or engage in imaginary play, his lack of a single verbal or signed word despite his five years, the fact that he needs no more than four hours of sleep at night.

She repeats back to you the reality that you sometimes find him, inexplicably, outside the house in the mornings, whimpering on the cold lawn. A perplexing night wanderer who can open doors yet can’t tell you why.

She talks about all of the things that he seems to not desire: friends, toys, compliments. That he has no apparent desire to show you a car he has unearthed from the depths of the sandbox or a dandelion plucked from the lawn.

Suddenly, you realize she is describing your life with him in such vivid, choking detail that you wish she would stop. Your chest tightens. She stops talking and looks at your face.

As you observe your child, who is still crouched in the play yard, shaking a leaf before his fathomless eyes, you realize that soon this moment of encounter with the white-clad psychiatrist will be over. She will be gone, and you will be left alone with the full weight of her words. Resist the temptation to cue the heroic narrative, no matter how much you might need it. And refuse to panic, yet. There will be time enough for both heroism and panic later. For now, stay focused on the matter at hand. Release your breath and feel the sun.

She is about to shake your hand and walk back to her office — and you to your car and your now changed life. Before you both do, ask her: What is the best advice she can give? Listen as she tells you that you’re going to need to establish a community of caregivers to help you, and that creating a new email account devotedly solely to his diagnosis might be helpful. Take the cards of the educational advocates that she offers. Make special note of the way in which she describes autism as a vehicle for getting him services that you now know he will not progress without. Hoard these snippets carefully, for although they do not comfort you, they are the best that she knows and here you will begin.

In the car, buckling his car seat, you realize this is ground zero, the beginning of the new, unwanted thing that — now known — might lead to help. All at once, you remember another morning, five years ago, when you were also in the car, when the phone rang and it was the genetic specialist on the line to tell you that the results of the amnio were in and your baby had Down syndrome.

You drive home. Get a Diet Coke. Lie on your bed. You cry while you watch him shake a spatula back and forth, back and forth, before his eyes while crouching in the corner of your room.

Don’t rush, but when you are ready, think back on the day of the amnio when you were pregnant with him. The day they took the sample they would use to test for Down syndrome. Recall the feeling that you had as they pushed the long needle through your skin and into your belly; how as you looked at his small silhouette on the ultrasound screen and all you could think was, “Hey, it is OK, I love you. I love you even if. I love you anyway.”

Realize, suddenly, that it is still true.

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Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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"Aspergers Are Us" Documentary Is Available on iTunes and Coming to Netflix

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Comedians Jack Hanke, New Michael Ingemi, Ethan Finlan and Noah Britton have grown accustomed to performing in front of audiences, but the spotlight is about to get a lot larger for the members of the “Aspergers Are Us” comedy troupe.

“Aspergers Are Us” first made headlines in 2011 as the first comedy troupe comprised entirely of men on the autism spectrum. Now the troupe is the subject of a new documentary, also titled “Aspergers Are Us,” which was released on iTunes this week and will be available for streaming on Netflix in December.

“I had come across an article about [‘Aspergers Are Us’] and I loved everything about them,” director Alex Lehmann told The Mighty. “Their energy, their sense of humor, everything drew me in. Their troupe defied my preconceptions of autism, which meant I could make a movie where I was asking a question instead of presenting an answer.”

The documentary follows the four friends, who met at summer camp when they were younger, as they prepare for their final show together as “Aspergers Are Us.”

“[W]e hope people become interested in us as comedians and want to see us be funny on stage,” Britton said. “Much less importantly, we hope people stop tokenizing Aspies and see us as a legitimate comedy troupe.”

“I was really drawn in by the high level of integrity of the boys,” Mark Duplass, the film’s producer, said. “They truly want to be judged on their own merits. They don’t want any pity. I find them to be not only funny, but forthright and honest in a way that I don’t often see in the world today.”

Those interested in “Aspergers Are Us” can purchase the documentary on iTunes or Amazon

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My Autism Inspires Me to Help Others on the Autism Spectrum

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I recently got a position with my local autism agency. This is the agency I first turned to when I found out they ran an Asperger’s social group. After having gotten to know the executive director and learning about the philosophy of the organization, I knew it was one I wanted to become a part of.

I finished training this week. I’m going to be working with children in an after-school program one day a week. I’ve already met some of those with whom I will be working, and I already feel at home. They are so friendly and welcoming. I can say the same about my fellow staff. Overall I get a great vibe from them.

I feel that I’m using my own natural talents to help others on the spectrum. I believe I was created to be who I am for a reason, and that is to show others their many gifts. I want to show others it’s OK to have a different operating system.

What I really like about this organization is that they celebrate autistics for who they are. They embrace their skills and talents, such as creativity and acting abilities. It feels great to be both a part of the team and a part of the community they serve. I’m like a bridge, so to speak.

I know what it’s like to be autistic, and I can use that to understand the people with whom I work and to connect with them on a special level.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock Images

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The Misconceptions I Want to Clear Up About Being on the Autism Spectrum

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I was diagnosed with an autism spectrum disorder (ASD) when I was 15 years old. My family all had their suspicions, but I believe they were afraid of there being something “wrong” with me. But gaining a concrete knowledge of why I am the way I am doesn’t change who I am.

Based on my experiences as a kid with ASD, here are the things I think everyone should know about what it can be like to live with ASD.

Saying “You don’t seem autistic” isn’t a compliment. Honestly, it’s extremely annoying to me. It tends to make me think you think less of people with autism, or you think everyone with autism is exactly the same. Everyone is different, whether they’re on the autism spectrum or not.

Don’t criticize us for stimming. Have you ever chewed your nails? Twirled your hair, tapped your feet, chewed a pencil, hummed? That can all be stimming, too. Twirling your hair and tapping your feet doesn’t hurt anyone, so why would rocking or drumming or any other stim be a problem? I’m beginning to believe stimming related to ASD is seen as “bad” or “annoying” by some people because of the stigma people with ASD are confronted with all the time.

Vaccines do not cause autism. I cannot stress this enough.

I am not Sheldon Cooper. While I may struggle with social cues and sarcasm as well, I am not a fictional character from “The Big Bang Theory.” I am not a walking stereotype.

I’d say to everyone out there who experiences the same misconceptions — I know how frustrating it can be feeling like you have to go through every day of your life dealing with people who don’t understand. But I firmly believe there are some people out there who are extremely good friends, particularly for those on the spectrum. Wait until you meet someone who will accept you for everything you are and not try to change the things that make you a part of the spectrum. There are those kinds of people out there.

And as for the loved ones of those on the spectrum, try to be accepting. Try not to have set expectations for behaviours. Your loved one is doing the best they can, and it is OK to try to give them a little push in the right direction. But if they don’t want that push, just let them be. And while they may not show or say it, if they put in the effort to maintain a relationship with you — even if it’s them just saying hi — it likely means they appreciate you.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock Images.

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Why an Adult Autism Diagnosis Would Mean 'Forgiveness' for Me

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Nothing much has changed since I posted about my fears regarding my upcoming autism assessment. I still wake up every morning with more questions than I had the day before. I notice and analyze everything I do. Is this an autism thing? Or is it a “me’” thing? Is this proof or just another quirk?

I’m yet to decide how I believe autism and myself interact. When I was diagnosed with anxiety, depression and then bipolar, I saw each of these as “afflictions” I was prone to — less immune to the debilitating effects of the illnesses but always with the end goal of being free of the struggles they could bring. Of depression and anxiety I had the hope that I could be “cured.” Of bipolar, I began to accept I was in for a lifetime of management.

Autism is different. Autism isn’t an illness. It is a challenge, it can be a disability. It can be managed, but it can’t be cured — and the general feeling among autistic adults is they wouldn’t wish it to be even if it were possible.

The choice to define yourself as an “autistic adult” or “adult with autism” is a personal one, stemming from what role you believe your autism has played in who you are. Are we ourselves first, with autism on top? Or is who we are built on the foundation of our autistic experience? Neither answer is wrong.

This process of self-definition and re-definition is important, especially when being diagnosed later in life. At the moment I feel entirely lost, unable to really “know” myself until I have all the facts in hand. As with the constant analysis of all my actions, I find myself analyzing the past as well.

How many things occurred because of difficulties I didn’t know I was facing? How many times have I been hurt, confused, or lost because I failed to understand the world around me the same way others do? How many failures and successes can I attribute to this new (to me) aspect of my self?

From this exhausting process of self-analysis, I choose to take the positives. I can identify so many moments in my life where a better understanding of my brain function would have resulted in a better outcome, but I can’t change that. Instead, I decide what a diagnosis would mean for me.

It means forgiveness.

For the little girl who wasn’t able to control her bladder following a change of schools. For the times she didn’t meet her “potential” because she forgot or felt unable to do something. For the awkward running style that had her mocked, her preference to speak with teachers rather than her peers.

For the child who sat shaking on a bus while her 6-year-old sister punched the bully in her defense. For the nights she cried after being betrayed by old friends, the frustration of not knowing how to connect with new ones.

For the teenager who used the bathroom as a reason to leave class and shake in a cubicle. For her inability to console her siblings when they were in distress. For the exhaustion she felt every day, even if she’d barely moved — the draining effect of people and noises and light. For her reluctance to drive, to socialize, the lump in her throat that rose when friends mentioned night clubs.

For the adult who fails still to connect with her family in ways that are meaningful. For all the nights she’s cried over that inability, all the nights she’s wished some fairy would descend and make her “normal” like her siblings. For all the times throughout her life she was misunderstood, described in terms that hurt her heart. She wanted to be good. She wanted to be everything.

She didn’t know how.

For the almost-30 single woman I am now, a diagnosis means the ability to forgive myself of all the expectations I didn’t meet. To let them sink into the past. It means I have been trying to function under the assumption that I should be able to achieve the same things in the same ways as my peers. It means everything I have achieved is a testament to my strength, my ability to persevere in tough conditions.

Most importantly, it means adjusting myself to a new way of doing things — one that will enable me to maximize my strengths and not be stunted by my weaknesses. I can let go of the guilt and the shame from mistakes made long ago, the ones that came about because I was working under the wrong assumptions. Trying to do things the “normal” way was never going to work.

Not for me.

I can finally forgive myself for that deep and unsettling feeling that I am different.

I am different, and I am all the more wonderful because of it.

I still have a lot of fears. I still worry about the label, how others will react if I choose to disclose. But I can’t choose what other people think. What I can choose is how I incorporate the diagnosis into my sense of who I am. I choose how to frame this experience.

I choose forgiveness.

Follow this journey on inshiftingcolour.

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Thinkstock image by Sylverarts

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Spectrum Toy Store Opens in Chicago for Children on the Autism Spectrum

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A quick Google search can pull up hundreds of sensory-friendly toys designed for children on the autism spectrum, but just because it’s billed as appropriate for children with special needs, doesn’t guarantee your child will like it. That’s where Spectrum Toy Store comes in. Based in Chicago, Spectrum Toy Store is the first toy store in Illinois, and one of several in the U.S., designed for children with developmental disabilities.

Behind Spectrum Toy Store is Jamilah Rahim, who decided to open the store based on her experience as a behavioral therapist. “[I] noticed that so many parents ordered their toys and sensory products from major online sites like Amazon and Ebay because they had no where locally to buy their products,” Rahim told The Mighty. “Then when they would receive their items the children were either uninterested in them or they were dissatisfied with the quality. I wanted to give parents somewhere local they could go and find toys and products that fit their child’s needs.”

Unlike web-based stores, Spectrum Toy Store lets children try its toys before their parents buy them. “Every child with a disability is different and their needs are different,” Rahim said. “Being able to come feel and see the product before purchasing it gives the comfort of knowing you have purchased the right product for your child.”

In addition to providing toys for children on the spectrum, Spectrum Toy Store also features individual and small group skill building activities – focusing on communication, cognitive, gross motor, fine motor, life skills, social skills and sensory activities – through its partner nonprofit organization, Children’s Advanced Recreation and Education. During the activity sessions, children use the toys sold in the stores, giving Spectrum Toy Store employees the ability to recommend toys to parents based on their child’s interaction with them. For those outside of Chicago, Spectrum’s toys are also available for purchase online.

So far, Rahim said, the response has been amazing, with people contacting her from outside of Illinois and even internationally. Her advice to people looking to provide similar services: “Consider all individuals when providing products and services. [Don’t] focus on the financial aspect, but on providing for a population that is underserved. [K]eep your passion as an advocate first and a business owner second.”

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