Tag Archives: parenting

I Worry About Autistic Children – Trouble in the School System

I was extremely fortunate in life, born into a large family who loved me greatly. Every one of them wanted to see me succeed. They pushed me and taught me things. My grandparents made sure I had good manners and my aunts and uncles taught me art and music. Cousins and family was fun but teachers and school was very difficult.

At home I felt confident and competent, this was always crushed when I went to school. My individuality was not cherished and teachers said I was too much of a distraction to stay in class. Eventually when I learned to sit still (which even now is hard on me) I was allowed to return to class with my peers.

They were strict and it was hard but in the end I had to want to go back to the regular class room so I would be motivated to sit still. Autistic people can do very well if they are motivated but our motivations my not make sense to others.

I’ve learned to use my own motivations as rewards for good work. I tell myself “if you do this now you can have a reward at the end”. Sometimes the reward may be a stretch or stim break, it could be a cup of coffee, or a snack. I need to be motivated and as an adult I have to motivate myself to create good habits.

It’s not much different than what I would do for my dog when helping him learn new habits. All creatures love rewards and I love my dog. I want to help grow good habits so my dog can have a happy life – we just both happen to love treats.

Teachers who punish, call out flaws, and ostracize children who are different were some of my biggest adversaries in school growing up. They didn’t know what to do with me back then. I was “smart and dumb at the same time”. Teachers also called me lazy. There were no accommodations for me growing up, I had to learn to blend in or get kicked out of school.

Fast forward thirty years and parents advocating for their own children often struggle to get reasonable accommodations for their children in the public school system. Schools want to offer many Autistic kids a minimal education and with our current political situation I worry things may get much worse.

Many great historical thinkers had trouble in school growing up. Imagine if they encountered a system that told them they were not worth teaching. What if nobody had taken the time to help them learn and grow?

Everybody deserves the chance to learn and grow. We need to make sure Autistic children do not get shut out of an education just because they have a different way of experiencing the world.

Autism is a Controversial Issue – People Fighting Online

I left Facebook a while ago because I kept getting sucked into the arguments between parents and Autistic people, Autistic people and the anti-VAX movement, and medical professionals and Autistic people. Today I logged back in and was quickly reminded why I left.

The first thing thing that upsets me is that all of these people think they know more about Autism than Autistic people, as if our first hand experiences are of little or no value. This is often parents but can also be medical professionals and organic health nuts (I eat organic but these people are extreme).

Cure culture fanatics telling us we are sick for wanting to stay Autistic – sick for wanting to stay the way we were born. Parents telling us we don’t understand because we are not like their child (some of us WERE at one point and have worked hard to improve as we grew up). Doctors telling us our claims don’t make sense to them , dismissing our complaints.

Next I am saddened for the children who’s parents are always telling everyone what a burden their child is. Many non verbal children can understand spoken language and may be able to read some day. Putting comments like this on the internet publicly doesn’t feel right to me. Telling everyone your child is broken doesn’t seem like loving acceptance either.

Brain damage and Autism do have similar traits but even if you have a brain damaged child – shouldn’t you love them? I am not a parent. All I know is how I would feel if my parents said those things about me.

If someone always talks about you with pity you will eventually begin to pity yourself. From a mental health standpoint this can cause a LOT of problems. Autistic people seem have more health problems and anxiety when they have low self-esteem.

There are a lot of unknowns with Autism. It seems there may be many contributing factors but my money is on genetics for most cases. Human brains are changing at a rapid rate, trying to keep up with the quickly changing world around us.

My brain is at ease with nature in the fresh air. The artificial world is unpleasant to me. Is this something primitive left over in my genetics, or am I a canary in the coal mine? Science may tell us some day.

Most upsetting are the people who want to cure and prevent Autism. I fear this could be a big problem for humanity if they succeed. All of the different brain types and thinkers make the world a better, more progressive, and interesting place.

I hate that this issue is tearing people apart. People get so heated and angry when someone disagrees with them on this topic, they say nasty things with little regard for the other person. It is nasty it is ugly and we really need to stop.

Stop telling Autistic people they are unwanted by society. That is what you are telling us when you say you want a cure for Autism or want to prevent Autistic people from being born. You are saying that being dead is better than being Autistic and I disagree.

I know you can’t reason with or speak to these people. They are close minded and the frustration, like Facebook, is a waste of my time – so I log back off and return to a happier place (my own blog).

The day this went live on Twitter someone took offense to my blog. Its crazy. You can not please everyone and my OCD would make sure I NEVER hit publish if I tried.

I Love to Hate You – Autism & Socks

Socks.

It is more of a Sensory Processing Disorder problem than an Autism problem, but maybe it’s an Autism problem because we don’t explain the discomfort to the people around us.

We don’t know you don’t feel the same way we do about socks. We think that our behavior should be self explanatory because socks just suck that much. I have very early memories regarding the unpleasantness of socks. They felt like fiberglass burning into my ankles and the seam was a large lizard wiggling around on my toes.

When I was a baby my mother liked to dress me in socks with lace trim. I hated lace more than anything. Thinking about those socks makes me itch. Nothing could ever make them feel right. Looking around me everyone had socks. I thought you all were crazy. Why on earth would anyone put up with this much pain?

My mother said it was to protect my shoes, because shoes are expensive. It was a logical enough explanation, but as I got older I remember rubbing my feet and ankles raw by pawing at my socks.

Wet socks and wet clothing have always been impossible for me. My mother once asked me to put on wet socks. I can’t remember very clearly what happened after she asked that question (perhaps I had a meltdown) but I feel like the situation ended with vomit.

As I got older I started picking my own socks at the store. Ankle socks with no seam in the toe were my favorite when I could find them on sale. I had expensive taste in socks. If I could not find socks without a seam, I prefer ankle socks with a seam on top but they have to be soft.

I tried wearing shoes without socks, most of the time I ended up with blisters on my tinder feet.My balance is not the best and I am a bit of a klutz. I imagine my feet take quite a beating when not protected by socks.

Flats were great until my feet began to sweat. Pools of sweat feel like oceans in my shoes – it is ALMOST as bad as wet socks.

I try to stock up when I find a type of sock that I like. If a company changes their socks it will take me a while to get used to them.

Nothing is more annoying than a sock problem. The distraction is so intense it becomes hard to think about anything else without stimming. Maybe that is why I went barefooted so much as a child. I loved the feel of warm dry grass and hot asphalt on my feet.

I don’t run around with my shoes off any more. Now that I’ve found socks that feel nice I prefer not to feel small things under my feet. (As an adult, at 125 lbs, your feet hurt more when stepping on objects than they did when you only were closer to 60lbs.)

Even now there are some sensory days that I just can’t handle socks. If that happens I don’t wear them. It’s that easy. It is not fair that I put myself through the torture.

Itchy socks take away my valuable spoons. I need those they are mine!

I’ve been wearing socks for over 30 years now. It has taken me a long time to go from hating socks to loving socks.

Baby steps, progress is progress no matter how long it takes.

When People Say Children With Autism Are Products of ‘Bad Parenting’ – Kerry Magro on The Mighty

This one gets me.

Autism is a measurable neurological difference in brain development. Brain scans reveal that Autistic brains are physically different and react to external stimulus in different ways than “normal brains”. These differences are visible in behaviors from early childhood. (Mine were VERY visible from the beginning.)

Autism also seems to be genetic. Looking at my parents, grandparents, aunts, and cousins – I have NO doubt that this is true. I know this now, but I did not always think this way.

Maybe it was my Autistic perspective, but my family was fairly strict with manners and public behavior.

I could be wild like the Tasmanian Devil but I knew when to turn it off. I learned NOT to have outburst in stores and could hold myself together until I was alone or in the bathroom.

From my point of view, working SO hard to behave, other kids who could not hold it together looked like brats.

I know because I WAS this child in my teen years. I did not make my mother’s life easy, but she loved me and accepted me. That is what I needed more than anything.

We did not know I was Autistic and my own mother OFTEN called me a brat, spoiled, and other names. She did the best she could. It was all just a misunderstanding.

My mother did the best she could raising me. She worked hard, long, hours. We argued, but she loved me unconditionally. I am the result of amazing parenting.

Saying I am the result of bad parenting is just another insult – telling me I am defective and broken. Stop telling us that there is something wrong with us. We are different and that’s okay.

Kerry Magro is an AMAZING voice in the Autism community. He is helping to change the way the world sees Autism and Autistic people. Kerry had the following to say in a recent post on The Mighty.

I can take NO credit for anything below. Please check out Kerry Magro and read the full article here on The Mighty.

It’s ridiculous to think “bad parenting” is a cause of autism. That should be the end of the conversation right there. But I do usually follow up these conversations after sharing about my personal experiences by saying the following:

“By being a champion to your child on the autism spectrum, you can make a difference in their lives.”

By showing your child unconditional love, learning more about autism and providing them with supports whenever possible, you can do wonderful things for your child. Advocate for them, and whenever someone says autism is “caused” by bad parenting, make sure to educate those around you about the harm of these misconceptions. And the next time that happens, you can use this quote from one of our leading autism advocates, Dr. Temple Grandin“Autism is a neurological disorder. It’s not caused by bad parenting.”

Please read the full article here.

How ‘Autism Warrior Parents’ Harm Autistic Kids – How Cure Culture Hurts

The other day I commented on one of those “Child Cured by Autism” posts on Facebook. What on earth was I thinking? The sharks appeared.

Disbelievers and angry parents who HATE Autistic aduts with the “high functioning” / Asperger’slabel. These people can not stand to see us grouped in with their children.

Things get ugly fast and I remove myself from the toxicity.

I see them on Facebook and hide them from my news feed. Memes by Autism Moms talking about how difficult being a parent of an Autistic child is. I get it parenting an Autistic child is hard – but so is parenting a typical child.

My biggest issues with these posts that these parents make the children feel like a burden they focus on the problems these parents have and are negative. Why can’t we focus on the positive parts of this child?

Focusing on someone’s deficits and shortcomings and telling them that they are defective or broken is NEVER okay – especially for a developing child.

Telling the world of your child’s “faults” via the internet is cruel.

Eventually, when your child is old enough they may desire to start speaking for themselves. This is a personal choice and should be respected.

When and if the time is right, I hope they DO grow to self advocate – we need more Aspies sharing in this world.

Adults usedto talk for me when I was a child. I believed everything they said about me – that I was stupid, rude, strange.

My parents spoke for me, often inaccurately but I never corrected them. I have never been very good at explaining my inner workings out loud.

Children should never have to grow up feeling like they are not good enough the way they are.

Autism Awareness month happens every year, but we don’t need awareness we need acceptance. We need love and understanding.

Like a flower, when nurtured, Autistic children will grow and bloom. Please don’t pour poison on your flowers.

I can take NO credit for the text below. Please check out the full article by Shannon Des Roches Rosa  HERE on The Establishment.

Autism Warrior Parents (AWPs) insist on supporting their autistic kids either by trying to cure them, or by imposing non-autistic-oriented goals on them—rather than by trying to understand how their kids are wired, and how that wiring affects their life experience. Ironically, an AWP’s choices not only interfere with their own kid’s happiness and security, but contribute to social biases that prevent autistic people of all ages from getting the supports they need. Worst of all, by publicly rejecting their own children’s autism and agency, and by tending to hog the autism spotlight, AWPs are partially responsible for the public’s tendency to sympathize with parents rather than autistic kids —which, at its most extreme, can mean excusing parents and caretakers who murder their autistic charges.

But parents who learn how to spot and sidestep AWP mindsets can make their autistic child’s life (as well as their own) so, so much easier.

Read the full article here.

To the Parent of an Undiagnosed Autistic Girl

Every now and then I come across something that really hits close to home. As an adult women on the spectrum – who was diagnosed late – the following post REALLY stopped me in my tracks.

Anna Nibbs contributor the The Mighty.com shares a passionate letter to “the parent of an Undagnosed Autistic Girl. This could have been a letter to my own mother although I can take absolutely no credit for Anna’s writing below.
Please check out the full post HERE on The Mighty.

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.

Please check out the full post HERE on The Mighty.

Many Women With Autism Are Going Undiagnosed | HowStuffWorks NOW

Even HowStuffWorks knows that Autistic women are going undiagnosed.

The male diagnosis structure is not fair to women and “high functioning” levil 1 or Asperger’s Aspies.

Autistic women are often told they “cannot be Autistic” because they have learned to hide their pain.

I take no credit for the video below but the fact that a big website is mentioning this issue is a bit of a victory in my eyes.

Autism is NOT a boy thing.

#shecantbeAutistic #actuallyAutistic

See the video on  HowStuffWorks.

Video link HERE!

 

Stuff Mom Never Told You – HowStuffWorks – has another great video here.

Video link HERE!

Letter to Toni Braxton Regarding Diezel’s Autism Status — The Liberal Aspie

Autism is NOT a disease that can be cure it is a way of thinking and experiencing the world. One does not simply git rid of Sensory Processing Disorder or change the wiring of their brains.

It is mentally damaging to make Aspies learn to blend in like neurotypical kids because it implies that they way they were born was not good enough.

WHY can’t he just be a wonderful Autistic boy? Why does he have to be “normal”. Poor kid is going to have self esteem issues in the future.

Dear Toni Braxton, Recently, you have announced in an interview with Access Hollywood that your youngest son, Diezel, “is no longer autistic,” giving credit to Suzanne Wright–in light of her death from pancreatic cancer–for his ability to “overcome his diagnosis.” I’m sorry to have to say this as a fan of your music, but… [. . .]

To say that your son is “showing no signs of autism” is to say that he has been taught to mask every trait that comprises his neurology in order to pass as a normal, average person. In other words, you and the therapists Wright referred him to have taught him that being autistic is frowned upon by society–and it shouldn’t be. Diezel may be a social butterfly now thanks to the speech and language therapy he received in school, assuming he wasn’t referred to a therapist outside of an academic facility, but that does not stipulate that he’s transformed into a neurotypical person.
Oh, and the “my son Diezel suffered from autism” line? The word “suffered” should only apply to cancer patients, NEVER autistic kids. God only gifted Diezel with the ability to think differently from everyone else.

Read full articel via Letter to Toni Braxton Regarding Diezel’s Autism Status — The Liberal Aspie

The Lost Girls (on the Spectrum)

“Misdiagnosed, misunderstood or missed altogether, many women with autism struggle to get the help they need.”

We should not have to feel this way. We should not spend our lives confused and wondering why our best is sometimes not good enough.

Original article below by  please check out the full post here on Spectrumnews.org

It took 10 years, 14 psychiatrists, 17 medications and 9 diagnoses before someone finally realized that what Maya has is autism. Maya loves numbers, and with her impeccable memory, she can rattle off these stats: that the very first psychiatrist she saw later lost his right to practice because he slept with his patients. That psychiatrist No. 12 met with her for all of seven minutes and sent her out with no answers. That during her second year at Cambridge University in the U.K., industrial doses of the antipsychotic quetiapine led her to pack on more than 40 pounds and sleep 17 hours a day. (Maya requested that her last name not be used.)

But those numbers don’t do justice to her story. It’s the long list of diagnoses Maya collected before she was 21, from borderline personality disorder to agoraphobia to obsessive-compulsive disorder, that begin to hint at how little we understand autism in women.

It should never be this hard – but stories like the one above are common. I hear them over and over again. Many Autistic women will not seek a formal diagnosis for fear of being misdiagnosed with another condition.

An initial screening for Autism for an Autistic adult can cost anywhere from $500-$4000 depending on where you live. My specialist doesn’t take insurance. These costs are out of pocket. Many Autists are unemployed or under employed and under paid and simply cannot afford the out of pocket costs.

Something has to change. We need help.

Resources for Families

A special thanks to Elena with Caring4OurKids and
Patricia Sarmiento with publichealthcorps.org for sharing the following useful links.

Autism Resources for Families
Sesame Street Autism Resources for Parents
Reduce the Noise: Help Loved Ones with Sensory Overload Enjoy Shopping
CDC Autism Links and Resources
Operation Autism for Military Families
Academic Accommodation Resources
Temple Grandin’s Teaching Tips
Organization for Autism Research Guide for Military Families
Estate Planning for Parents of Kids with Autism

What is Autism?

After the Autism Diagnosis: Staying Connected as a Couple

The Guide to Securing Life-long Accommodations for Adult Children with Special Needs

When an Autism Diagnosis Comes in Adulthood

Creating a Sensory-Friendly Home for Your Autistic Child

The Guide to Buying Used Accessible Vehicles

Supporting Individuals on the Autism Spectrum Coping with Grief and Loss through Death or Divorce

Autism Spectrum Disorder (ASD) and Sleep