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The List of Waiting Lists You're Put on When Your Child Is on the Autism Spectrum

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No matter where your child is on the autism spectrum, you have probably experienced having to put him or her on a waiting list at some point for some type of support. Whether it was to get in for a diagnosis, to go to an out-of-district school for those with learning disabilities, and/or, when your son or daughter has reached adulthood, to receive state-funded day services and/or vocational rehabilitation programs.

If you ever go on social media you are probably only a few minutes away from a wine or coffee meme from one of the members of our autism community because of these lists. Waiting lists are awful. Depending on the state you are in and what funding is available, a waiting list could last a few days to even years.

My parents experienced those waiting lists again and again during my adolescence. It took my parents 18 months to finally have me receive an autism diagnosis when I was 4 years old. Then there were also waiting lists for me to get into a school that specialized in those with learning disabilities. The list of waiting lists goes on and on.

When I think about that long road from then till now I often think how my parents’ preparation really made all the difference. That’s why I can’t advocate enough for planning ahead! As I learned from a Transition Tool Kit I read at AutismSpeaks.org, there are more people with autism currently waiting for things such as appropriate supported living settings than there are openings in those settings. It brings the whole question of, “What happens when the school bus stops coming?” to a whole other level.

When you are planning ahead I recommend reading more about what your state provides in terms of therapies and supports for those with disabilities. Fill out all appropriate waivers and forms as early as possible and keep yourself ahead of the game.

Finally, while you are on those waiting lists, regardless of what point you are at in your child’s development, remember to advocate for others in the special needs community. Advocatingfor legislation specifically focused on our community can result in huge dividends. Word of mouth has moved mountains in the past, and we can do the same for the causes that are important to us. Become an advocate and champion for us, like my parents did for me.

It can change so much for our loved ones.

Autism Speaks’ Transition Tool Kit is designed to assist families of individuals with autism on the journey from adolescence to adulthood. You can read more about the tool kit here.

A version of this post originally appeared at KerryMagro.com.

Image by notwaew

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When Anxiety Affects My Son on the Autism Spectrum

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My son is on the autism spectrum and has ADHD. He is a sweet, kind boy who loves to make people happy. But lately, his emotions are getting the better of him, and he has lost the ability he has to self-regulate those emotions.

We got a puppy about two and half years ago named Fergie. She is an adorable cockapoo. We got her for our son. We wanted him to have a buddy, a pal, a friend who would be there unconditionally. He liked her but didn’t want to get too close to her for a while. Like, he likes that she’s there, but she can be over there, and that’s totally fine. It’s kind of similar to how he feels about people. It made no difference to us, though — this was a relationship he could create on his own terms without anyone feeling badly.

But then, after Fergie got out of our backyard gate one time too many, my son began to worry. A lot. Any time anyone went for the door, he would panic. He would try to block the pup from getting out, but in the process he would trip, or cause someone else (like the person trying to leave or enter the house) to get caught up in his steps. He would yell. We would yell. He would slam the door before the person was in or out. It was a mess.

He would ask to check the gate to the backyard relentlessly. He would not let the dog go out without checking the gate first. No matter what we were doing. No matter what he was doing. This was the most important thing to him.

About six months ago, we started seeing a psychologist who works with kids on the spectrum. Not because of the dog stuff specifically, but there were a number of things mounting, including the development of self-awareness by our son, that he is different. Up until now, he had never really asked or talked about his autism. With self-awareness came sadness. The moment you realize that you are different is not as easy one. There were questions and concerns. There was self-loathing, anger and frustration. There was resentment. It was more than I could help him with.

Fortunately, my son and this doctor connected right away. But the anxiety was not subsiding.

So what do we do? How do we help him?

For starters, we continued to seek the guidance of our professional. We came up with some ideas on our own: He can check the gate no more than five times a day. We allow him to ask us where the dog is as many times as he wants, which seems to soothe him. He doesn’t come running and looking for her all the time. He will be reading or playing, or practicing piano or violin in another room and just call out and ask where she is, without interrupting his life. Which is improvement. For all of us.

But then, last night, we were upstairs, and the kids getting ready for bed. My husband was going out. Our son was at the top of the stairs and heard the door and panicked. The dog was right next to me on the landing at the top of the stairs. She perked up when she heard the door open but didn’t move much. She was not planning on going anywhere, you could tell. But that didn’t register with my son. He ran to the middle of the staircase and tried to hold her back. The front door was still open because my husband was worried his son was going to fall down the stairs. We both told him to get off the stairs, and he yelled back at us, “The dog! The dog!” I yelled, “Get off the stairs!” and told my husband to go because I wanted the door closed. I got my boy onto the landing. He cried and said through his tears, “I’m sorry! I just don’t want Fergie to run away.”

I gave him time to calm down. I spoke softly and asked if I could talk to him. He said he wanted to say something.

“Go ahead, but then it’s my turn, OK?”

“OK.”

He calmed down, still fighting back tears with his mouth tensed. My heart broke. My boy. My baby. But he said nothing.

“What?” he asked.

“You wanted to say something to me first,” I said.

“Oh. I’m sorry. I’m so sorry but I just don’t want anything to happen to Fergie.”

“I know, honey. Can I talk now, buddy?”

“OK.”

“Honey, Fergie is our dog, but you are my son. My job is to protect you—”

“But what if Fergie got away?”

“If Fergie got away… it would be hard, but we can get another dog—”

“I don’t want another dog.”

“And we’re not getting another dog because Fergie is safe and sound right here.” (At the sound of her name, Fergie is now smothering him with kisses upon kisses.)

I held his hand and continued.

“But I can’t replace you,” I said, putting my hand on his heart.

He shook his head and looked up at me with the huge pools of love and hope that are his eyes and smiled.

“I love you, buddy.”

“I love you too, Mommy, but it’s just my autism. Does my sister have autism?”

“No.”

“How do you know?”

“Because doctors know how to tell.”

“Oh.”

“I wish I didn’t have autism. It makes me say things and it makes me be mean.”

My boy is not mean. But my boy does have autism. And he is realizing what that means. It means that he is rigid sometimes and that he is not always aware or sensitive to other’s feelings. And this is where, I think, it may get hard.

What happens when self-awareness, anxiety, ADHD, autism and hormones all want to be center stage? I hope the help we are getting does help. I wish for my boy to get some peace. I pray my boy can get through the next couple of years unscathed, and that when I look in his eyes, I will always see his baby face. All innocent and full of hope and dreams. And that he is still smiling, and silly, and with tons of love in his heart for the world to see.

Follow this journey on My Special Boy.

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When a Stranger in GameStop Overheard Me Say My Daughter Is Autistic

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My older daughter and I were shopping at the mall, looking for a birthday gift for my younger daughter. We wandered in to GameStop, and were greeted by an employee who asked if he could help us. We kind of shrugged and said something along the lines of, “We don’t know what she wants.”

I explained that my younger daughter is autistic and that we were shopping for a birthday gift for her tenth birthday.  At that same time, a customer standing there suddenly blurted out that he was also autistic, and began talking to us, giving us advice on what to get for an autistic person. The employee smiled and walked away after seeing that we were comfortable with the customer.

The customer suggested a Nintendo handheld system with certain games that help with socialization and/or developing skills, and went into detail about how they can help people with autism. He then showed us the games and the different systems, and gave us the pros and cons of each system. He really knew his stuff!

After about 15 minutes, the employee returned to where we were standing and asked if we had any questions or if we had our questions answered by the other customer. I let him know that the other customer was fantastic and very knowledgeable. At that time, the customer let me know that he had applied for a job at GameStop and was just waiting to hear. I told him I would put in a good word for him. He then went on to discuss his experience with the various agencies in my area, and how he had benefited from them, and that my daughter might benefit as well.

I sincerely hope that GameStop hires this young man. He was able to talk to me about my younger daughter’s potential likes, dislikes, and social needs on a level that a neurotypical person simply could not. We need our society to embrace, empower, and employ people of all abilities.

I have always been very open about my daughter’s diagnosis, and occasionally I have wondered if this was the right thing to do. My daughter isn’t just autistic… she’s smart, funny, and beautiful, and has an energy that is like no other. But autism is a big part of who she is, at least to me. It’s led me on a journey to a whole new world. I have met some of the most fantastic people ever, and I’ve learned who my real friends are. I’ve learned to appreciate the little things.

And yes, in case you’re wondering, we did buy the gaming system he recommended.

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Netflix Picks Up New Original Series About Autism, 'Atypical'

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Netflix has picked up a new original comedy series, “Atypical,” about Sam, a teenage boy with autism spectrum disorder, who is on a journey to find love and acceptance.

The eight-episode series stars Keir Gilchrist as Sam and Jennifer Jason Leigh as his mother. So far it appears as though none of the cast members are on the autism spectrum.

“Atypical” is the second special needs-related comedy to be picked up by a major network this year. ABC’s “Speechless,” starring Micah Fowler, was picked up early for a full first season following the success of its pilot episode.

“Atypical” will begin production later this year in Los Angeles.

The Mighty reached out to Netflix and has yet to hear back. 

Photo Credit: Gage Skidmore

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Why, as an Autistic Adult, I Fear the Brexit Effect

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In the run up to the Brexit referendum vote, as a relatively recently diagnosed autistic adult, I’ll admit I was scared.

I was right to be afraid. The country had descended into divisive and hateful rhetoric perpetuated by factions of a Conservative leadership. The same rhetoric that had been used by people in power to generate a genocidal movement against the Jews, not so very long ago, was being resurrected to further political interests, irrespective of the human cost. In the same breath that international courts of justice were still convicting people of war crimes committed during World War II, atrocities of war and hatred were being perpetrated against Syria and the victims who had fought all odds to escape the hell inflicted upon them.

History shows that in a society which seeks to implement political austerity the areas which will suffer are the vulnerable, the poor, the arts, economic growth, international relations, scientific and social research. I have witnessed that when communities are in pain due to very real economic and social struggle, it is easy for the powers which have inflicted these wounds to divert justifiable anger away from themselves to other sources of blame. In the case of Brexit, it was European immigration, and since the vote, European citizens living, working and successfully contributing to the U.K. economy have become innocent targets for exponentially increasing hate crime.

As a disabled adult I understand the effects of this kind of campaign of austerity and nationalism can be far-reaching and reverberate through many generations.

Steve Silberman, author of “Neurotribes” found that during the run up to World War II, Austrian psychologist Hans Asperger was researching a condition which he came to name “autism,” but laterally came to be known as “Asperger’s” (a term no longer used in the DSM V). In the vacuum of hatred and demonization of the disabled tearing through Nazi Germany ahead of the war, Asperger apparently focused his findings around the capabilities of his young charges to protect them from the gas chambers. The research focused around boys but did not claim girls were unaffected, simply that they had not been encountered during Asperger’s research. In the maelstrom of the last days of the war, this research became buried and then for decades lost in Europe by a society for whom the wounds of the war were still open and weeping. It was not until the 1980s that Asperger’s work was recovered and translated from German by a British psychologist, Lorna Wing, and the criteria for diagnosis broadened and opened up.

The result of these lost years of potential advancement in understanding is a critical crisis in the autism community. Research still remarkably focused around curing children and a diagnosis criteria that is still dramatically biased towards boys has left girls and adults floundering without support and minors often at the mercy of archaic curative measures.

As increased understanding and awareness open up, society has seen an increase in recognition and diagnosis; however, continuing proliferation of stereotypes and misinformation mislabel this increase an “epidemic” which needs to be tackled rather than an opportunity to embrace and improve people’s lives.

In what the United Nations in 2015 called a “human rights crisis,” the focus on cure rather than acceptance and awareness resulted in a community which Silberman described as “one of the largest disenfranchised minorities in the world.” With an estimated 85% unemployment rate, a mortality rate of sometimes 30 years less than the general population, largely driven by suicide and a prevalence towards addiction of vulnerable adults who have never been granted the acceptance in society to make the connections required for a healthy, enabled and satisfying life, it is vitally important that steps to integrate and connect this group with society are made.

In my own life I’m almost grateful for the late diagnosis which allowed me to grow up unhindered by a label society did not understand. While having faced major difficulties in youth and young adulthood, which I now understand were as a result of neurological differences and challenges, I recognize I might not have had the opportunities to grow and experience the things which I have with an earlier diagnosis. That being said, by no means am I ashamed of my autism.

Growing up with a persistent sense of “otherness” and lack of belonging, I was continuously looking for somewhere to fit. The understanding I now have, even if it involves becoming a member of a group who corporately do not conform, is a relief and the answer to a lifelong puzzle. However, stigma and stereotypes still abound, and I feel the constant need to explain myself. I have friends who know more about my neurological processes and reasons for doing, saying or being unable to say things than they know about my preferences in pizza (Franco Manca, if you are buying), comedy, movies, art, literature or music. I don’t want to live in a world where I am forced to persistently second guess and justify myself. I am far more interested in finding out what your superpower of choice would be. Mine, for the record, is mind reading.

I have no desire to spend my life talking about autism, but in recent years the responses I have received, ranging from the utterly dehumanizing, “You can’t be ‘an’ autistic, you’ve been lied to, that is a lie,” “You can’t be autistic because, well, you’re quite funny, aren’t you,” to a former friend who took offense at my having to change plans due to an enablement support session and complained I was letting them down to spend the day being “differently-abled” and a “spastic,” mean I recognize the responsibility I have to work towards reducing stigma and stereotypes. I’m neither mentally challenged nor a savant genius, but I was once told I could not be autistic because a report showed my IQ was too high for me to be “that stupid.”

I recognize the responsibility that as someone classified as a “high-functioning” adult with a relatively regular life, not hindered by the speech and severe neurological difficulties of others like me, I have to speak out and to show the world what autism really is. For a long time this year and last I went through a period of feeling very lost and broken and that not fitting must somehow be my fault. I want to work towards an environment of that not being the case for anyone else.

I realized as I sat in North London watching the result of the EU referendum come in back in June that for a very long time I had been cosseted from what was going on outside of the city by a bubble of cosmopolitanism, a bipartisan result of the liberalism that shrouds the capital. I knew membership of the EU was vitally important to my life and that of my tribe because of the human rights, workers protections and research money enshrined within its membership. The U.K. is already the first country in the world to be investigated by the UN for its treatment of disabled citizens. Given my situation, three months on from that vote I am still very, very scared.

Considering the hidden history of autism and the current world political climate, it is now more important than ever before for those of us on the spectrum to make our voices heard, to advocate and tell the world our complex, multi-faceted and very human stories. It’s our responsibility to fight for every child and adult who struggled before us and for the rights of all those to come, so never again may any person on any spectrum of disability be dehumanized, tortured with invasive therapies, murdered or just ghosted outside of society to fade and disappear.

A common symbol of autism awareness is the missing puzzle piece, used to describe what people believe is a missing part of an autistic person that needs to be found. I refute that. It is not an autistic person who has something missing in them but society which has a missing piece that is the space required for autism to fit and for the neurodiverse to be enabled to flourish.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

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To the Person My Child Is Staring At

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This is to you, the parent of a small child at a soft play center we visited today. You were with your friends all enjoying a natter and a cup of tea while watching your small children play.

I’m sorry my daughter was staring at you.

I’m sorry she stood so close.

I’m also sorry that instead of leaving you to it after having stared at you once, she came back time and time again and stood there not speaking, but staring once again.

My child is inquisitive, curious and interested.

little girl smiling

She’s a puzzle of a million pieces that have no edges, no limits, left open for the world to add too, making it a trickery of games.

She’s exhausted and frustrated. She’s confused and puddled. Her mind is like a thousand intertwining rivers, bending like the Mississippi, her thoughts swimming up stream, her mind tiring with each twist and turn the processing takes.

She wanted to speak to you, she wanted to tell you how cute your baby was, she wanted to ask his name, she wondered why he was crying and screaming. And she almost certainly wanted to give him a cuddle and say hello to your beautiful baby boy.

She is not weird. She is interested.

Most of all, though, I am sorry for not being sorry for all those things. The only thing I’m actually sorry for is your attitude.

I’m sorry you felt compelled to raise your eyebrows at your friend and direct them to my child. I’m sorry you had to nudge your other friend and practically point at my child to show her she was staring. Yes, we all saw her, even your friends.

I’m also sorry no one ever taught you how to talk to small children. I’m sorry you were taught to judge small children because they “look” different.

She’s just 6. She isn’t going to bite off your arm.

Next time, set an example. Say hi, and ask her name. If she’s having fun, she may not answer you. She may run off, she may be surprised at the sudden interaction. But at least you’d be leading by example. Maybe you could also kindly teach your own children it’s nice to be nice.

Follow this journey on Lots of Love and Affection.

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