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The Problem Adults Who Cannot Live Independently Face in Ontario

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When I see one of those parenting memes that say something like, “You know you have done your job right when they move out and live independently,” I cry.

My son is autistic. He is smart, but he is on the edge — the line organizations draw in the sand. He doesn’t qualify for help. He needs help. He will be 18 years old soon.

You see, we live in Ontario, Canada. Cutbacks are abundant for services needed. Each year the government makes more cuts, and more people are left out. The second my autistic son turns 18 years old, there are no services. Oh sure, we could pay privately, about $90,000 a year. Just a second while I go climb my money tree.

They will tell you the services are there… if your child is homeless. If your child assaults a police officer. If your child is on drugs or in an abusive situation. They do not tell you what that may really mean: your child may be put in solitary confinement in a psych ward at a hospital until an opening comes… which is five to 10 years, if at all, since your child now has a roof over their head.

There is a program here called Developmental Services Ontario. You can get services if you have an IQ of 70 or lower. They provide help such as grocery shopping, paying bills, helping out around the house, to allow the adult in need independent living without the need of expensive special housing. My son has an IQ of 74. He cannot read, write, or articulate. He’s considered nonverbal. He can do visual perception skills, blocks, 3D building on the IQ test, bringing his score up.

Why isn’t the requirements for DSO based entirely on Adaptive Living Skills instead of IQ? A low IQ does not mean lack of living skills and a high IQ does not mean an abundance of living skills. Adults do have their ALS tested at the third round of the application process. That’s right, there are three steps, and even after all that, you can still be turned down.

Step one: IQ on psychological assessment. Step two: meet with parent/caregiver and adult-child. Step three: ALS assessment alone with adult in need. My son can’t get past stage one. The cutbacks made the requirements more stringent because they don’t have the funds to accommodate everyone in need. I guess the government believes only rich people can have autistic children?

My husband and I are extremely concerned for our son’s future. We are appealing our application in the hopes of services, with the help of our son’s psychologist. There are no guarantees. Housing is scarce, but there is hope if he can get DSO.

Our son will happily live with us forever. He does not have a drug problem. He is not violent. We have no problem having him stay home with us. He’s a great, funny, loving guy. However, if we die, my son is left without help.

If you would like to read more: “Forgotten: Ontario adults with autism and adults with Asperger’s” by AutismOntario.com (PDF)

Is this story similar where you live?

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When We Took Our Son on the Autism Spectrum to a Coldplay Concert

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I’m going to try not to overstate things here, but, well… last night was one of the most beautiful experiences of my life. And it wasn’t Coldplay’s doing. Yes, the concert was spectacular. Yes, I love the band. But the beauty of it for me lies in the connection we experienced with our son Davy. It lies in the connection our son experienced with thousands of other people.

His words (as we were walking back to our car after the concert) about this are way better than mine: “I felt super thankful tonight that so many other people love Coldplay like I do!”

Super thankful.

The need to feel known and understood is inherent in us all. The need to know and understand those we love is also a powerful force. Coldplay, out of nowhere, was the impetus for the first real point of connection we experienced with Davy.

I’ll never forget coming home from wherever and walking into the house to hear his dad Mark say, “He loves Coldplay.” Wha?

The child wasn’t even 2 years old. He wasn’t talking or pointing or doing anything to give us the slightest hint as to what he wanted or needed (except screaming until we figured it out). We were exhausted, discouraged, baffled.

But those three words: “He loves Coldplay.” Well, it ignited real connection.

We began playing albums for him. We put them on electronic devices and found out quite quickly that he could read.

We finally had music we could all listen to in the car and sing along to without the poor child melting down. We danced in the living room together and watched the concerts together. People began telling us about Coldplay “things” available to Davy. It was our “thing.” And we so desperately needed a thing. And you know why? Connection. Coldplay gave us connection during an isolating and lonely season of our lives.

Last night’s experience was the culmination of all of the above. And we knew it was a risk. He’s a sensory avoider, so the likelihood that he could make it more than 15 minutes was slim. But we had to try.

Last night came as a result of years of hard work. It came as a result of the investment of hours and hours of regulatory activities, hours and hours of helping him learn to communicate his needs, hours and hours of us reading and learning to try to understand the essence of who he is.

We are so grateful. Because for those few hours, we experienced connection and understanding with our son that we will remember forever. And hopefully, he will, too.

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What My Son on the Autism Spectrum Teaches Me About Himself (and Myself, Too)

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My son Jeorge was 4 years old when he was diagnosed. We already knew he was autistic, as I had been an early years professional for 15 years. To begin with, even with some knowledge, I was scared. What would this mean for Jeorge? Would he ever speak? Would he ever stop head banging and crying, screaming and being afraid to go outside? We felt like we were drowning and out of our depth. I read so many books and researched so much. I worried about dying, something I never worried about previously. Who would look after my darling, precious son? Who would understand his needs, and who would honor him like we tried our best to do?

Eventually, I took the advice to stop reading books and start listening and feeling what we needed as a family. Through the years, we have met many families and people on the autistic spectrum. I learned each of us has our own unique way of being. I believe there is no right or wrong way to live or to support, and no right or wrong therapy or strategy to try.

I stopped trying to please outsiders and their opinions of what we should be doing with Jeorge. Many opinions came to us from all angles, some of which showed a lack of knowledge and true understanding of Jeorge’s needs and reasons for his extreme behaviors, and some of which helped.

Jeorge is almost 11 years old now. He is still nonverbal, and we have offered him various communication tools. He uses them all in some way: PECS, a communication aid, sign language and body language, and a multitude of sounds we now have decoded. I have learned over the years to understand what Jeorge is telling me. I am still learning, and there are things I don’t always understand, but I am getting better.

We learned over the years to fully embrace Jeorge’s quirks and his love of nature, which is easy because we live in rural Wales. We spend as much time as possible in streams, rivers, forests and swimming pools. We also stopped buying him “traditional” toys and instead bought sound and light-up toys he adored. We allow him to spin his toys if he wishes. He eventually stopped head banging as he became more relaxed because his sensory needs were being honored. If he needs to stim, flap, jump, or spin we do not ask him to stop. We have learned he needs to do this for a multitude of reasons.

I am constantly learning about myself. Jeorge is teaching me skills such as patience and letting go of any fears of the future, because Jeorge has taught me to live in the moment. He has shown me how strong I am, how big my heart is, and to see the joy and the beauty in everything.

I believe Jeorge was born the way he was meant to be. We do not see autism as a “disease” or something to be “cured.” The more we watch and listen, the more I think he sees and feels so much more than I am aware of. Alex Lowery and many others are educating us with their own experiences and want to share their perspectives. Thank goodness, for even with the most heartfelt intentions, sometimes non-autistic carers, parents and professionals get it wrong. This is the time for autistic people to be heard. Those who are willing and able to share real insight to autism can build the bridge between two different ways of thinking and being. I do my absolute best every day, even if sometimes things do not work out the way I had hoped. I am sharing our world in the hope that it can offer some guidance to other parents who are on the beginning of their autism journey, a community that can grow and educate.

One day, our compassion and understanding toward people on the autism spectrum will be so much more than it is now.

A version of this post originally appeared on Dazlious.

Image via Thinkstock Images

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21 Songs That Have Helped People on the Autism Spectrum Cope With Sensory Overload

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Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting and much more. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia and post-traumatic stress disorder, although anyone can experience it.

Music is not always a reliever to sensory overload — in fact, sometimes it can make it worse, so you should ask your loved one on the spectrum if playing a song helps or hurts. But for a lot of people with autism, music works wonders when they are trying to calm themselves down. We asked our readers on the spectrum who use music as a tool to share what songs they play if they’re experiencing sensory overload or melting down. We’ve dropped a Spotify playlist at the bottom of this post if you’d like these songs in one place.

Somewhere Over the Rainbow/What a Wonderful World” by Israel Kamakawiwoʻole

Someday I’ll wish upon a star / Wake up where the clouds are far behind me / Where trouble melts like lemon drops / High above the chimney top / That’s where you’ll find me

Ride” by twenty one pilots

Oh, oh, I’m falling, so I’m taking my time on my ride / Oh, I’m falling, so I’m taking my time on my ride

What I Am” by Will.i.am on “Sesame Street”

If what I am is what’s in me / Then I’ll stay strong, that’s who I’ll be / And I will always be the best  / “me” that I can be.

You Are My Sunshine” by Johnny Cash & June Carter

You are my sunshine, my only sunshine / You make me happy when skies are gray

Gravity” Sara Bareilles cover by Alex & Sierra

Set me free, leave me be. / I don’t want to fall another moment into your gravity.

Here Comes the Sun” by The Beatles

Here comes the sun, here comes the sun / And I say it’s all right

Moonlight Sonata” by Beethoven

I Will Wait” by Mumford & Sons

Now I’ll be bold / As well as strong / And use my head alongside my heart

Shake It Off” by Taylor Swift

But I keep cruising / Can’t stop, won’t stop moving / It’s like I got this music / In my mind / Saying, “It’s gonna be all right.”

Bitter Sweet Symphony” by The Verve

But I’m a million different people / from one day to the next / I can’t change my mold

Amber” by 311

Don’t give up your independence / Unless it feels all right / Nothing good comes easily / Sometimes you’ve got to fight

Count On Me” by Bruno Mars

You can count on me like one two three / I’ll be there

Ho Hey” by The Lumineers

I belong with you, you belong with me, you’re my sweetheart

Bliss” by Muse

Everything about you resonates happiness / Now I won’t settle for less

Shackles (Praise You)” by Mary Mary

Take the shackles off my feet so I can dance / I just wanna praise you

(Sittin’ On) The Dock Of the Bay” by Otis Redding

Sittin’ in the mornin’ sun / I’ll be sittin’ when the evenin’ comes

Thank You For Being A Friend” from “The Golden Girls” performed by Cynthia Fee

Thank you for being a friend / Traveled down the road and back again / Your heart is true, you’re a pal and a confidant

Love Me Tender” by Elvis Presley

You have made / My life complete / And I love you so

Wind Beneath My Wings” by Bette Midler

Did you ever know that you’re my hero, / And everything I would like to be? / I can fly higher than an eagle, / For you are the wind beneath my wings.

Hallelujah” by Panic! At The Disco

And if you can’t stop shaking, lean back / Let it move right through ya

Shut Up and Dance” by WALK THE MOON

I said you’re holding back / She said shut up and dance with me

What would you add? Let us know in the comments below?



21 Songs That Have Helped People on the Autism Spectrum Cope With Sensory Overload
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A Letter From Your Autistic Friend

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Dear friends,

You probably don’t understand why I told you I am autistic. You probably don’t get why I told you I have issues with comprehending people or certain things.

Here’s the thing: I did it because “comprehension” is what gets me into trouble. I tend to lose friends because of it. It can cause issues with communicating and understanding things in general. I tell people so they are warned that I don’t do these things on purpose. It’s just a part of who I am, and I have to work around it, but it’s hard to do this. I do my best, but sometimes my best isn’t good enough.

I get things mixed up. Sometimes I don’t even know I do it till it already happens and the person has walked away. I ask that you please try to be patient with me. I am trying. Please remember that it’s not you, and it’s not entirely me — it’s how my brain works. I try to be patient with myself, but it’s harder when my friends aren’t with me. I’m sorry for any misunderstanding that may happen, but please know it doesn’t mean I’m not trying to be a good friend.

There are many things I’d love for you, my friends, to do, but the most important things are these:

I’d love for you to let me know if you feel I am not understanding you correctly. I can’t tell when I am having comprehension difficulties, so I need people to let me know, “Hey, I think you may have misunderstood me.”

I’d like it if you didn’t treat me like a child or think that, just because I am autistic, I am in need of constant help. I can live my life on my own. Yes, there are some things I need help with, but I don’t need constant supervision. Being autistic doesn’t mean I am a child. I’m 23, so please treat me as such.

But most importantly, when things get tough, please have patience. I know things can be difficult, and I don’t expect you to be perfect, but I ask that you try to have patience with me. I know it can be frustrating; it’s frustrating for me, too!

Being autistic is part of who I am. It’s not a “disease,” and I don’t need to be “cured.” Yes, things can be difficult, but I wouldn’t trade it for anything. I just need friends who are patient and understanding.

We autistic people just need a society in which we can be ourselves — and it starts with you, my friends.

Sincerely,
Your Autistic Friend

Image via Thinkstock Images

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Why I Bothered to Pursue an Autism Diagnosis at 63 Years Old

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I’m 63 years old. I’ve spent a lifetime being alone and different, and not understanding why.

I had hoped my autism diagnosis earlier this year would change my life. It didn’t — at least not in the way I expected. No surprise that answers aren’t always solutions.

The good news is I now understand my head-banging and unmanageable behavior as a child, the absence of friends and rejection by adults, the isolation, the missing words and social skills, the depression and anxiety, the fundamental disconnect with the world I live in. It’s no longer my fault. I grieve for the child I was but have forgiven myself for being what always seemed so “broken.” I’ve also learned to forgive the people who walked away when I was young.

My challenges are more understandable now. Those that come with an almost 40-point IQ gap are well-known fellow travelers. I can and will get lost driving places I’ve been to countless times. Directions, maps, locations… none of it makes any sense. Shapes and patterns, unlike numbers, elude me. After all these years, it’s become amusing.

My autism is a new acquaintance. It took two months to schedule an evaluation with a psychologist last winter. Another month passed before I got the diagnosis. I was so overwhelmed during the final appointment that I could only stare, literally at a complete loss for words. Everything changed at that moment… except for me, the one thing I desperately wanted “fixed.”

I was at an autism fundraiser last week. One of the speakers was a parent who had raised thousands of dollars over the years for a “cure.” He was most passionate when he spoke about how the world had completely changed for him when he learned his child was autistic. All I could think was that the world hadn’t changed for his son any more than it had for me.

I still don’t remember things I need to do without a written list carried in my hand, taped to my phone, or sticking out of my shirt pocket. I still forget bills and other papers if someone moves the pile I keep them in at the breakfast table. I’m still speechless with more than one person because it takes me too long to think of something to say. My meager collection of conversation starters still runs out too quickly. I still need to get lost in a book or simply lie down and shut out the world to calm down. I still struggle to make friends.  

What has changed is that I understand my autism as a different way of being, not a deficit, disorder or disease in search of a cure.  

Just a different way of experiencing the world. Yes, I have some challenges, but I’ve always had them. I also have gifts that enrich my life in ways I never really appreciated before. Logic, focus, determination and an abiding calmness. A love of numbers and words that made up for my workplace foibles and helped me have a career. I may have no words to describe my feelings or emotions or the compassion I can feel, but they surge under the surface, are genuine and can overwhelm me when least expected. I love deeply, even if it’s reserved and not obvious at times.

My son asked why I would bother to be diagnosed at such a late age. It’s taken six months for me to answer his question. My diagnosis has completely transformed my life, not by fixing it as I hoped, but by explaining it. Understanding has helped me begin to let go of the pain and disappointment from childhood, to have reasonable expectations of myself and the people around me, and to learn to like myself just the way I am. It also has helped me find a community of people like myself who are reaching out for friendship, acceptance and affirmation. I’m not alone.

As I said to my wife not long ago, I’m seriously at risk of being happy for the first time in my life. Not a bad diagnosis at any age.

Follow this journey on Lost Words.

Image via Thinkstock.

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