Autistic Masking

 

Never hold your breath for one second if it means trying hard to fit into someone else's world. Its not fair that Autistic's have to act like someone else completely diffrent. Being "Diffrent" is what makes us more unique in our own way that we're trying to get Neurotypicals to understand. If Neurotypicals can see the beauty we see in each other then maybe we can actually make things "Crystal Clear" for those Autistic's that want acceptance.

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Acceptance is something we strive for because some Autistic's have been hiding for months or even years about their own personal medical issues like anixety, depression, and Autism as well. Hiding our other half is like asking us to completely "Give Up" on how we look at oursleves in the mirror knowing will always remain Autistic forever.

 

Many Autistic's have their own outlook on "Living Life with Autism" but most should keep in mind just because the world has information and data about us doesn't mean they know you personally. The best version of you should be the person who doesn't hide behind a "Mask"...

 
 

Jordan's Journey

"My 10 yr old son Jordan was diagnosed with moderate Autism at 8 yrs old. We started noticing things when he was a baby. He loved to spin wheels and in circles, ALL THE TIME..  He started talking at age 3. He drooled until he was 7. But was a bundle of joy & a miracle baby. In kindergarten is when we started noticing behavioral issues. Such as hurting other children and not caring. It scared me to death. Me and my husband immediately took action and sent him to the psychologist. There they decided that putting him on a non-stimulant medication, was best. He was also very destructive and disturbed his classmates on a daily. I literally cried for 2 months. Until I noticed that is behavior and grades started improving tremendously. That year we decided another year in kindergaten was best. However though home life was a different story. He wouldn't use certain towels and would throw Tantrums and we didn't know why. We got approved for intensive in-home therapy meaning a therapist was at our home for 2 hours after school for a year and a half. That was ALOT! I would personally call in sick so they wouldn't show up that day. WE ALL NEEDED A BREAK!! I thought it was way too much on a 7 year old child, going to school all day then two hours of therapy. When in fact it was not helping. His behavior did not get any better nothing changed. I started doing research for myself and all signs pointed to AUTISM. I told a psychologist and he told me no. I told his therapist they told me no. And this went on for months!! At this point I was practically in tears and felt like the worst mom in the whole world. I just didn't know what to do for my son anymore. We finally stopped intensive and home and didn't have therapy for a year and a half, because they couldn't find someone or just gave up on us. After a year-and-a-half a therapist call me and set up an appointment. I sat in her office and looked straight into her eyes and burst into tears. I said "Look this is what we have gone through and nothing is helping and no one is listening. We are at our wits end. So if you are not going to listen to me then I'm going to get up and walk out of this office right now." She asked me what my concerns were and I told her. She said "Oh I am actually an Autism specialist." I could have kissed her. 6 weeks later, he was improving. She was doing autism therapy with him only as much as our insurance would a lot without having a diagnosis. She then told me that she would quit her job if he was not autistic. She then referred us to TEEACH. This is a top Institution for autism and they're testing is one of the best. After a year on the waitlist we finally got in, after 2 days and 8 hours a testing and about 15 people involved they gave us the diagnosis. Me and my husband honestly thought he was going to be diagnosed with high functioning but he was diagnosed with moderate functioning. OK!!!! We felt like we were on top of the world. And ohhhh how things were gonna change for the better! His Therapist got a promotion and left without a min notice or a referral. Just up and left.. 

Welp, nope nothing changed and we we're more confused then ever. Okay he has a diagnosis? Now what the heck do we do from here! Since then we have had two therapists, one was a male mentor and I had to let him go. He didn't show up on time wasn't doing much of anything and it was absolutely ridiculous! He had a father he did not need a male mentor. His behaviors and Tantrums we're getting worse. He was being bullied at school and on the bus, he was in 3 EC classes, tutoring and a small Counseling Group. The meltdowns and the Tantrums kept coming but they were getting worse. Some nights we would be up until 3am. We were at the school three times a week. I didn't know what to do anymore. Me and my husband's hands were tied. After a whole year of all this garbage, the counselor told us the last 6 weeks of school, They had a therapist on the school grounds.  My thoughts? "Are you got to be f---ing kidding me!!" So now he has a new therapist and she does work with autistic kids but she is not specialize in autism. He has been suspended from school and the bus. We have had to pick him numerous times due to meltdowns. One staff member said "His behavior is a refelction of y'alls parenting." Another said "You need to have him committed for a mental evaluation."  "HE HAS AUTISM!!!"
After all that crap, he told a Teacher he wanted to commit suicide. Ohhhhhhhhh NOW THEY ARE LISTENING? Now we actually get help?  He still sees a psychiatrist but only once every two months for about 5 minutes. We try to explain that he still has meltdowns ect and all she says his "Wow he getting better, I see so much improvement." HUH?? YOU WHAT? She doesn't specialize in autism either. Needless to say the school systems are NOT educated.

Me and my husband will continue to fight and advac for Jordan. Why? Because we love him. He is so sweet and loving. Jordan loves to play guitar, and sing. He loand sing. He loves to draw and do puzzles. He adores animals and has a leopard gecko named Henry and a goldfish named Penelope. Jordan loves tall laundry baskets where he can get in with his stuff amimals & blankets and rock for hours. His stuff animals are very real to him. They all have names and he speaks to them and loves and kisses them and tucks them into bed. Jordan loves to snuggle with me, his daddy and his Grama. We just want Jordan to have a fare chance at school and education. We believe schools should be more educated and realize my son is not bad he is Autistic. Jordan is very smart and intelligent and our goal is to have him homeschooled within the next 2 yrs. So this is our story and I will for sure share more stories about Jordan. About his cute tics and Tic attacks, sensory issues and Aniexty, and the things that come out of his mouth that have made us want to run & hide. But all we can do is laugh.. if you are a parent with an autistic child you must have a sense of humor!"

-- Amy

How I Finally Got to Go to Summer Camp

 

"Every once in a while, I read an article that says something like “One of the things the unites Jewish Americans is going to Jewish summer camp!” This statement is then followed by some quotes about the good times people had at those camps.

Statements like this, however, make me extremely angry and upset. Yes, I’m Jewish, but not only wasn’t I allowed to go to sleep=away camp, at the camp I was allowed to go to – day camp – I had a miserable time.

You see,  as a child, I had a double whammy – serious asthma and autism (today, what I had would probably be called Asperger’s). Before the age of 2, I was taken twice to the emergency room with asthmatic attacks. It seems like from the age of around 8 to 12, I spent a third of my time hunched over, wheezing, coughing and inhaling steam from my old-fashioned steam inhaler. At the age of 8, a doctor told me I shouldn’t take part in strenuous sports like basketball, should have only limited gym at school, and should spend a few months at a convalescent home. While my parents, happily, didn’t do the last, they told me constantly that I was too damaged to do most physical activities. As late as age 15, when some kids invited my to play football, I foolishly told my mother, who angrily told me she’d make a special trip and stand outside the playground just to make sure I didn’t play.

As far as my autsm is concerned, at the age of 4 or so, my nursery school teacher told my parents that I was acting withdrawn and not interacting with the other kids. They recommended a nursery school, just established, for “emotionally disturbed” children with a psychoanalytic orientation. I ended up going there for three years. The psychiatrist there (whom I was told was a “play doctor”) diagnosed me as having “infantile autistic psychosis.” In time, I became more outgoing, formed friendships with the other kids and even led them in games. This continued the first year I was in “regular school,” meaning public school. Then, however, my mother had a breakdown and had to go to a psychiatric ward for six weeks. Little by little, I became withdrawn again. This was augmented by the fact that I couldn’t adjust to the sports-oriented, rough-and-tumble play of the other boys—not only was I very awkward, but I froze up when they threw the ball to me. I also had no idea how to take part in their rapid, back-and-forth teasing style of humor and was easily hurt by their jokes. By third grade, I was one of the least popular kids in the class. I went to a Freudian-type psychiatrist once a week, then once a months, but that didn’t help me.

Anyway, I went to day camp for three years, each year to a different day camp. My main memory is walking in a trance, trying to follow the other boys and girls wherever they were going, but basically being ignored. One time, in a vain effort to make friends, I bought some sort of Tinker Toy in to camp and showed it to one of the other kids? “Can I have it for keeps?” asked this kid, who was a bit of a wise guy. “Yeah,” I said. Even though I wanted to keep the toy, I hoped this would make me more accepted. I didn’t.

The second year, I did make a friend—another kid who didn’t really fit in. His name was Eddie, and he was always making up stories and fantasies involving imaginary characters. Since I was doing the same thing at home with my brother, I fit right in with Eddie. He called his characters the “Moo-Moos.” One day, we all went on a field trip to a school that had a swimming pool. Most of the kids, especially the boys, ran into the pool enthusiastically. I was scared—actually TERRIFIED—of the water, especially deep water. Eddie wanted to know why I wasn’t going into the pool. “Moo-Moos don’t swim,” I answered weakly. He went in anyway. It wasn’t until I was in my mid-20s that I conquered my fears and, at long last, took and passed a swimming class.

The third year, my mother told me that she had a problem with the day camp, and that the counselor wasn’t very nice. Therefore, she decreed, I wouldn’t be going to day camp anymore. My younger brother, on the other hand, still went to day camp during the summers, and even learned how to swim. Interestingly, around the same time I was in the Cub Scouts and I fit in fairly well. I believe the difference is that in the Cub Scouts, the “den mothers” actually planned activities, got the kids involved and were constantly interacting with them, whereas in day camp, the counselors took us to and from our destinations, but otherwise left us to their own devices. I remember when I was 12, my mother took me for a walk somewhere, pointed to a settlement house, and said, “They’re getting ready for the summer day camp.” I said nothing, but inwardly I was very jealous and EXTREMELY angry because I still wanted to go.

In a few years, my parents started sending my brother to sleep-away camp, one of the very same Jewish summer camps I mentioned earlier. I knew I wouldn’t be able to go because of my health, even though my asthma had begun to get better by that point. When it came to my asthma, there was no arguing with my mother. I needed her to be in my corner, but instead she constantly said things like “You have to play with the cards you’re dealt with,” “You have many handicaps,” and, simply, “You’re handicapped!” There were some special camps for asthmatic children, I later learned, and maybe if the doctor had told my mother about them things would have been different, but information was hard to come by in those pre-internet days.

When I was 15, I thought I found an way out—looking at a local summer job board for kids,  I saw a position advertised for a waiter at a summer camp. I called them, but made the mistake of telling them that I had asthma. “Well, we don’t know,” said the person on the other end. “We’ve had to send several of our campers home in the past because of asthmatic conditions.” I was so miffed that, for spite, I didn’t register for a “Teen Day Trips” program in our neighborhood – something that my parents WOULD have approved of.

In college, the summer camp issue came up again when many of the kids talked about working as counselors in summer camps. It seemed like 90 percent of them had been counselors. Since I hadn’t had camping experience no one would have hired me as a counselor. “Yeah, most summers I’ve work as a counselor at one of the summer camps upstate,” one of the kids said, as casually as if he’d said, “I went to the store to get a gallon of milk yesterday.” I could have killed him.

Fast-forward 20 years later. I was working as an assistant editor at a trade magazine when I noticed a small ad in the Village Voice for the “National Guitar Summer Workshop,” a music camp and intensive workshop in Connecticut for both kids and adults. I signed up for two weeks. I had a great time—most of the day we took courses, like playing our instruments in different styles (I played keyboard and bass), songwriting, composition, music theory and so on. At nights, we played in several ensembles—I was in both a rock group and a country group. The kids and the adults lived in different dorms, but we were all housed on the grounds of a fancy private school that was out for the summer. On lunch in the cafeteria, the “cafeteria lady” greeted us all with, “Hello, campers!”

I’d finally gotten to go to a sleep-away camp, 20 years late."

By: Ron G.

 
 

Ever's Story

 
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"My daughter is almost 5.  She loves being outside. Her favorite color is blue. She loves nursery rhymes. She has a memory like no other. She hates bees, flies, lizards and things that buzz around your head. She only eats pancakes, chicken nuggets, cheeseburgers, grilled cheese, chips and hummus. She says the damndest things but doesn’t realize she is funny so yells at us for laughing. She wears rain boots daily. She hates washing and brushing her hair, but loves playing in the pool and in the rain. She picks 3 books to read every night. She can memorize songs after hearing them one time. She is the tallest kid in her class. She LOVES roller coasters. When she is excited, upset, over stimulated, tired, happy she sways back and forth and spins her hands. Her favorite movie changes each month, but when she likes something, it’s all we do. She likes unicorns, whales, horses and “only wants one black kitty”. She is the strong willed, headstrong, opinionated and brave. 
 

 
 

Life isn’t perfect, she isn’t perfect, I’m not perfect.  She is my best friend and she makes me whole. She is Autistic."

-- Through the Eyes and Ears of Ever

 
 

Kathy's Story

 
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Typically when one thinks of getting a hair cut, stress and anxiety is probably the furthest thing on your mind. When living on the spectrum sometimes things that come easy to others, aren't as east for other. Whether it be fear of scissors, inability to sit still, or struggling with the process of a hair cut due to sensory issues, the struggle is real. Getting hair cuts is a common struggle among those on the spectrum. In this heart warming story, Jonathan who is on the spectrum struggles with hair cuts. It's never been an easy task, and at times would feel like a nightmare. But all of that changed when Kathy and her son went to the local barber shop and met Denny, the proud owner for over 40 years. After just a few visits Jonathan was very comfortable. Jonathan has limited communication skills, but that doesn't stop him from expressing himself or limit his keen sense of good in people. Not mentioned in the news clipping below, is how Denny is a recently is a survivor arterial bypass operation after surviving from severe injuries from a car accident, yet continues to cut Jonathan's hair- without issues. His time and compassion has done more than he'll probably give himself credit for. I love uplifting stories like these. 

 
 

An Anonymous Story

 

"My cousin is high on the autism scale. He was bullied mercifully and when ever I would hang out with him I would protect him. Being 6’4 he didn’t have a problem. I believe my mother was there. Like her I would rock to music and I had impulse control problems.

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Grade school was fine. I had my friends and obviously my symptoms weren’t a problem because we were all crazy kids back then.

Middle school sucked. I was bullied like crazy, taken advantage of. I met my only friend there which turned out to be the worst thing I could have done. I got into high school with him and drugs and alcohol took over.

I could function with the booze. I had no anxiety or awkwardness but I’ve done the stupidest things on it. I have a son who doesn’t even know me because of a one night stand I had while drunk.

I’m a convicted felon. Stuff I wouldn’t EVER do sober.

Fast forward to today, I realized that the bullying made me a better person. I have more empathy then most people. I know how it feels to be down and I would do anything to help.

But I believe it’s more of my autism. I’m too much of a people pleaser than anything."

--Anonymous

 

Bullying is never 'just having fun' or 'just joking around'. Bullying is long lasting, much more lasting than any bruise or scrape. I say this because it effects of being belittled and ostracized, stay with you. I literally think back to middle school, feeling insecure and gross. I mainly felt alone. I've always had a few but meaningful friends. I'm sure you're thinking that we ALL were all weird and awkward in our own way. And that is true. It's easy to pass it off and not think twice about it. Especially being on the other side of bullying. But for some this meant they dreading walking down the halls, or hating lunch time because they always sat at the end of the table by therselves, always avoiding the locker rooms and having to be exposed to people who make your life hell on the regular, or having people make fun of your clothes. Something a person truly has no control over. 

Kids taunt or point out anything different from themselves. I can say I've been on both sides of bullying. It's embarrassing to look back at now. Regardless of what it stems from it's always uncalled for to make someone feel small. Which is why it's so important to teach your children young to understand and accept those whose are different. Teach your children the beauty of standing out and lifting other's. Preach acceptance and inclusion. Every person deserves to feel welcome, accepted, and respected. 

 
 
 

Sean's Story

 
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"I think of my autism as a gift and blessing! The reason why I say that is because autism has given me a incentive and a extra reason to work hard and to earn success! and when I  do earn success it will be more rewarding compared to if I did not have a disability and things were easier for me than they are for me!!

1 of my beliefes  is that the grass is green where ever you water it! If you want to become a successful person and if you want to achieve your goals the way to do that is simple never ever give up, embrace and welcome challenges and work towards your goals 24/7!!"

-- Sean 

 
 

Lei's Story

 

"D is a very amazing boy. His mother is our daughter 26yr old, but sadly expresses that by yelling and screaming and belting him sending him to his room when he's not doing as she wants ect. She has tried to kill him way before he we was 3 and told he had autism, which my hubby and myself think he wasnt born with it. She used to hold pillows over his face at 2 weeks old and throw him across the room onto the bed. He has had an rotten life with his parents, who thought being stoned or drunk was the first thing that mattered. We had at one point taken them to court. We took over and we have been the primary carers, even though he lives with his mother more now that prep has started. She's embarresed by his behavior. His parents split up a few times, drugs and fighting. D was not looked after at all. At this point in time were in the middle of family court to stop his father from seeing him after 3 years of sexual abuse. We're so proud of him, as he has had such a life you would never wish on the worst person in the world. With everything with us, he hates going to his mothers. But on the other hand, loves her and still wants to go but not for too long. We hated it when he started school as that ment more time with his mother and new boyfriend. In all of his life which was with us, it's so sad and were doing the best we can. D does not have meltdowns with us, but he plays up so much for his mother and we believe he has them with her daily. He has also born with clubbed feet not too bad, but parents never really looked after them. He's now suffering with for this. He cant jump nor run to fa,r walk for too long. His parents love the attention when medical people are around, fake tears. A lot of it is sad, when hes had to been under a general anesthesia and crying on. Waking as he hates bandaids his mother would smack him and the staff sister told her, "He's just coming around. He's just upset.", mother would say, "Well he knows its gotta stay on his hand, so he can just get over it."  Ok, thats his short story, you can see now why we love him even more than as much. We have been fighting all his life with our daughter and his father since he was 45 mins old, after he was born. From the moment a beautiful baby boy came into this world he has suffered at the hands of our daughter and his father."

 Lei- AUSTRALIA

 

Be aware, always speak up.

Children and adults with disabilities are at a much high risk of being abused. The reality of the matter is this, people and children are being subjected to abuse because they are seen as an easy target, easy to blame, may have difficulties expressing theirselves, or even just don't know any better. Regardless of the reason know it's so important to look for the signs and not ignore them. Abusers are not usually a stranger. More times than not the abuser is close to the victim, sometimes even family members. Do not hesitate to speak up if you think someone is being mistreated, a lot of the times these victims don't have a voice to ask for help. Be their voice. 

 
 

Teresa's Story

 
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"I’ve had the pleasure to work with children in the ASD spectrum for over five years now in Colombia. Here are a few things I’ve learned throughout my experience and the benefits of working with these wonderful children. 
What most people think of as Autism is not really one condition. Two children show very different symptoms and require different accommodations/ activities within the general classroom. 
Students with ASDs learn best when there are no changes or surprises in their every day routines. Even small, out of nowhere changes can have a big impact on their ability to learn. From this, you can start identifying their needs and what activities work best for them. 
In Colombia’s school curriculum we ensure educational inclusion. In order to do this correctly, it is our job to teach other students (who aren’t in the ASD spectrum) to respect & care for students who are in the classroom with this condition. We must get them to understand, respect and love them.
I think one of the key elements of being a good ASD teacher is to have patience, love and understanding for these very unique children that can become so much more with the right amount of love, care and self belief. It is our responsibility to help every student reach his or her academic potential!"

--Teresa, Colombia

 
 
 

Bob's Story

 
 Brothers Bobby and Nicky

Brothers Bobby and Nicky

"I remember Nicky's diagnosis like it was yesterday.  I had to leave the Dr's office early so I could go in my car and cry.  The Immigrant Song by Led Zeppelin was playing in my car and I remember blasting the song while I cried punching my steering wheel several times.  It was all a blur and in 1999 there wasn't really an internet or a place I could quickly go to get information.  We started reading books and immersing ourselves to try and figure out how I was going to "fix" Nicky.  Yes, I felt at the time that I would "cure" my son.  There wasn't a goal I couldn't hit and now it was something related to my son.  I knew I would not be defeated.  The problem there was I did not know my "enemy" and it was something I was not prepared for as time went on.  Over the years, we tried several things.  Nicky is on the severe side. I remember when he was three he verbally told me he loved me.  That was the only time he verbally ever told me.  Now he signs and tells me with his eyes and that billion dollar smile.  Later, we had Bobby and watched everything he did and when he was diagnosed more on the mild end, I did not accept it.  Looking back we only lived and breathed Nicky everyday, so knowing he wasn't "like" Nicky, we felt he was fine even if he was behind in some milestones.  So, now having two kids on the spectrum is very challenging because they are very different kids.  We've tried many different things with both our children and love them very much.  My current goals for them are eating healthy and exercising.  Many children and parents on the spectrum have weight problems.  This is something that is concerning to me because I always say I need to "outlive" my kids.  I try to live a healthier lifestyle mixing in my pasta and pizza.  After all, I am Italian!! We've been fortunate to have help along the way, but the biggest gap I see in our special needs community is with Nicky turning 21 he ages out and we need to find a day program.  They are out there, but Nicky is more on the severe side so it is tougher.  I have not been impressed with what is out there, but will continue to look.  I've mentored many parents along the way to help them not make the same mistakes I've made and give them useful insight so they know they aren't alone.  I'm always here to help.  I created a Facebook group page called The Circle for our special needs parents and professionals.  It is a safe space and the best thing I've ever done on social media.  The final thing I'll say here is my Nicky and Bobby have simply made me a better man.  I am so empathetic to all children and adults I see. I am truly blessed and thankful." 

 
 

If you're interested in learning more or want to take a peek into The George's life raising two boys on the spectrum, you can follow him on instagram @fit_autism_dad