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young girl and her dog

All my life, I knew I was “different.” As a child, I was described as shy. I had “temper tantrums” frequently. I found it difficult to make friends, couldn’t make eye contact, found it hard to speak to others, and struggled with both social skills and communication skills — even confidence. I remember going through primary school with severe anxiety. As I went through each year, it became harder and harder to make friends. I remember feeling so different from my peers that I tried to change myself in order to be accepted. This didn’t stop the bullying, though. Eventually, as an 11-year-old, I was diagnosed with mental health difficulties due to self-harming. Ever since then, I have battled a string of mental health problems from anxiety and depression to anorexia nervosa. I let myself accept the reason I was so different was because of the difficulties associated with my mental illnesses.

That was until my mental health disability advisor turned to me one day during one of our meetings and mentioned the word “autism.” Of course, I had heard of autism. As a student who is training to be a special needs teacher, I have come across many children who have been diagnosed with autism. I have done academic research and even essays on the disorder. So when my disability advisor turned to me and mentioned the word in relation to myself, I paused for a second. In this stigmatized world, autism may be seen as something most often associated with children. Many of the children I had come across with autism faced challenges and most were nonverbal. Though I can struggle with some everyday tasks, I have always put this down to my mental health challenges.

Despite my doubts, my disability advisor handed me an AQ-10, an autism-spectrum quotient questionnaire, to fill in. I scored 10 out of 10. An autism referral is strongly suggested when a person scores six or above. Once she had my consent, she registered me for a referral with an autism assessment charity, and the journey began. I realized most of the behaviors I had put down to my mental illnesses were pretty consistent with those associated with autism spectrum disorder. Although I communicate, I have some difficulty reading expressions or body language. Although I know you’re there, I cannot make eye contact. I am hyper-aware of my senses; I am either too stimulated or under-stimulated, which leads to repetitive movements known as stimming (rocking, hand-flapping, knee-bouncing). I like tactile objects and explore with my hands. I cannot deal with social gatherings or being outside of the house. I cannot ride public transport or leave the house effectively. People sometimes feel I am selfish or short-fused; I have meltdowns when I cannot deal with my emotions and struggle to understand when you are not OK. Time is a big thing for me. Routines and timetables are the center of my life. I cannot hold down a job, despite being able to do it. Though it may not appear to be so, I struggle every single day.

Autism is a broad spectrum. I have been told a diagnosis of autism is very likely, although I will not know completely until my assessment. However, I feel already I have learned so much about myself through this referral that I had never learned before. I feel as though autism explains my life, and I am not ashamed of that.

Having a diagnosis of autism does not limit the possibility of being something amazing. I may be different, but I am not less.

Images via Contributor.

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Today, I watched a child answer questions accurately, give great answers, generate a story — and all the while his shoes were off, and he was jumping out of his seat every three seconds, making silly faces. My position was to focus on and marvel at his ability to multitask and provide accuracy with some admiration. Other adults… did not seem to care as much about his accuracy or aptitude, but rather complained about his ability to sit and attend.

Don’t get me wrong, I think sitting is an important skill. But to me, it is clearly not a prerequisite for learning, intellect, or expression of thought. I believe sitting just makes us feel more comfortable and at ease, and it can allow people within a school setting to do their jobs more easily. The challenge is that not sitting, making silly faces, or other behavior issues people might consider “noncompliant” can carry the weight of gossiped negative reputation. The kind of reputation where people may not smile when you enter a room, they may not cheer you on, and you may be separated from other children in the classroom. Can you imagine walking into a learning environment daily where you face this type of judgment? Now imagine being a child carrying this weight at least six hours daily. In my experience, this is what happens often in classrooms, private therapy organizations and schools across the country.

Not fair, is it? To judge someone based upon what you hear, or even observe thirdhand, and then decide to treat them accordingly. This seems to be an unspoken truth at IEP meetings and within schools. It’s what we do often as adults, if we are not careful, to one another. So let’s not be super surprised that we impose this on children. Do I sound angry? Well, this is a particularly hot-button issue for me as a behavioral analyst. I will try to keep my emotions in check.

Honestly, you often get one chance to make a great impression. Children with autism can display certain behaviors that are deemed challenging. Sometimes aggressive. Sometimes brutally honest language. Sometimes a little bit of both. In my experience, oftentimes a child with autism and related behaviors makes one false move, and this may even carry him through elementary school. It’s not what is written as much as what is said between staff, staff to students, and within administration. A shameful truth. So where does this dilemma leave a parent? What is a parent to do? Here’s what I’d recommend:

1. Maintain a good running record of any incidents and documentation of such.

2. Understand and discuss the reinforcers being used within the school setting and support the team in creating items that are particular for the school environment, knowing that the reinforcer should adjust based upon the task and its challenge.

3. Create and enroll your child in activities that support their interests and feelings of accomplishment and camaraderie. This could include music, singing, Lego clubs, train clubs and more.

4. Ensure functional behavior assessments and/or analyses have and are being conducted. A full-day observation on more than one occasion would provide ample information about social interactions, antecedents to behavior. Also, include with this an evaluation of work task ease or difficulty, language provided during directions, and staff interviews (paraprofessionals, lunch staff, etc.).

5. Add a matrix to the behavior intervention plan. A matrix is the schedule and strategies of implementation of the actual plan across your child’s day. It is a large spreadsheet that displays each class by day, the providers, goals to be implemented, and specific strategies by each provider inclusive of time of day and class. Although lengthy to create, I have found the matrix to be most helpful when observing for implementation and program-planning purposes.

6. Schedule monthly matrix meetings. This supports the IEP and its implementation as an active, viable document to be followed and analyzed by each professional, along with the specific role they play.

7. Allow your child to feel all the feelings of happiness, sadness, frustration, joy, pride and honor — each one through taking the time to verbalize it with them and discuss the feeling states.

8. Maintain communication with the school and have targeted, non-IEP-based meetings with the director of special education to arrive at decisions and provide insight into program planning and how things are moving for your child. Oftentimes, this relationship can support better decisions for your child and those with similar profiles.

9. Consider exploring other educational options.

10. Attend professional development workshops and conferences to understand best practices within the fields of study in which your child receives services. This can arm you with better tools in IEP development collaboration, matrix planning and more.

Children are people with feelings and insight, sometimes unexpressed. When they are looked over, looked beyond, and not honored because of specific behaviors (learned, allowed, or not yet fully shaped), this level of reputation-following does not escape them. This can put parents in a challenging position of sending their children to an educational environment or therapy practice that has not found the love- or like-ability yet. I believe our job as practitioners is to not only find it, but be the people called to support families and help our clients be better about this.

Image via Thinkstock.

A version of this post originally appeared on Landria’s website.

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My daughter is 11 years old and on the autism spectrum. She needs social and emotional support to stay happy within herself. She is a very sensitive child, her environment affects how she feels physically and has an impact on her emotional health. Sensory overload can cause her discomfort, and busy environments can affect her concentration. She wants to connect with others, but she is also apprehensive of other people’s reactions, which in turn makes forming lasting friendships difficult.

Despite her having to balance her day with these difficulties, her learning is unaffected. I find this in itself an amazing credit to my daughter. She works incredibly hard, and more than anything she wants to please those teaching her. Her reaction in the classroom has always been to withdraw when things get tough rather than let anyone know how she is feeling. When you have a quiet child with autism it is difficult for education staff to realize they have an additional need that warrants support.

My daughter was diagnosed with autism at the age of 9. It was a drawn-out process, starting with my first visit to the general practitioner when she was 7 years old. Prior to her diagnosis I have had to brunt unprofessional comments from teachers and therapists who provided conflicting advice, questioned my parenting and assured me my child showed “no signs of autism.” I know it isnt these professionals’ faults. There is little understanding of how girls with autism present themselves.

What seemed to be misunderstood the most was that while my daughter held it together at school, her frustration would build to a point where by her emotions were uncontainable at home. Not only did she melt down daily, she would also hit herself and others through utter frustration. As her parent it was a difficult time for me to watch my daughter struggle with nowhere to turn for support and limited knowledge to draw from.

Thankfully once my daughter received her diagnosis the comments from professionals shifted to slightly more tactful ones. I look back at the lack of support we received throughout the diagnosis process in disbelief. But despite this negative experience I do feel it made me stronger. In having to fight to be heard, it gave me the confidence to question other people’s opinions and the confidence to advocate for my daughter when needed.

Fortunately for my daughter, we are now receiving the support that has been needed for so many years. The professionals we are now working with do mostly understand my daughter’s needs, and she has a support network in place to help her through her day-to-day.

There is no surprise that with this improved support, my daughter’s coping ability has increased. She frequently manages her emotions and works on strategies to manage her day. She is also doing more extra curricular activities both in and outside of school. But most of all, with ongoing support it is apparent that her self-esteem is increasing and she is generally happier in herself.

It is difficult to be a parent of a child who seems so misunderstood by so many. It is difficult to be put on waiting lists and have mixed and sometimes unprofessional opinons thrown at you along the way. While I was waiting for appointments for my daughter I couldn’t see an end. But now that she has a diagnosis, I am working with professionals who have a better understanding of girls with autism. At last, all of the waiting and frustrations have finally started to pay off for us, and I believe with continued support my daughter will continue to flourish, continue to achieve and continue to grow in confidence.

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Of all the people I encounter, the ones who don’t believe in autism are the hardest to deal with. As if it were the Tooth Fairy or some other mythological creature, some people say “Autism is something that doctors make up to give drugs to kids who weren’t raised right.”

They don’t understand that autistic brains are physically and chemically different than “normal brains.” The nonbelievers don’t understand genetics, psychology or temperament. And you can’t explain the science because they often don’t believe in science either.

As I stand in front of them they tell me I “just need more practice” or am “not trying hard enough.” Sometimes they blame my problems on my parents for raising me “wrong,” which isn’t far since everyone in my life did the best they could.

My best is never good enough for these people, and my pleas for help are only excuses to them. Toxic people, who may mean well, frustrate me beyond all reason as they enjoy their ignorance.

Inside I am begging for them to have compassion and see the real me.

This has got to change. Autism is a real thing. I am a real person. I am doing my best, and it’s all I’ve got.

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My brain and body work differently than most people. That’s not really a problem until someone expects me to do things “their way.”

I do things differently and typically have to teach myself most things unless I have an amazing teacher.

This was a problem for me in school because my teachers couldn’t understand “my way” any more than I understood the way they did things.

I see things differently in my mind than other people. First I think visually, but I also have a way to access complex language when typing. I can think of words, but I don’t think in words. The words are accessible, but primarily my head is full of snapshots and videos. All my memories are videos, but most of them have no sound.

I have sound memories too, but they are separate from the words and videos unless the sounds come from music. Music is an amazing world for me – I feel it so deeply in every inch of my body and brain.

I don’t remember words. They don’t stick – unless they are sung or repeated over and over and over again rhythmically. Sometimes I do this in my head if I have to remember something, but if you ask me to repeat back to you something you just said to me – you are out of luck.

I don’t speak the way I type. I often spend a lot of time observing in the background.

When I do speak up, I keep things short, unless I am in a chatty mood or on a topic I love. Then I can ramble mindlessly forever and nobody can get a word in. (I try not to do this because I realize it can be rude – another reason I stay away from alcohol.)

Humor makes life easier, and being able to laugh at myself whenever I have a social mistake (because they happen every time I am around my co-workers) has saved my life.

Before I would let the anxiety of trying to be “work appropriate” get to me. I did not trust myself. Now that I laugh things off – and in my head I say “Asperger’s” as a cartoon caricature of me is rolling her eyes at me in my head.

I smile back.

I don’t blame myself for these mistakes, but I try to learn something from every single one of them. Hopefully I will remember next time (or the time after that) not to make the same mistake. I remind myself I am doing the best I can and move forward.


I’m not normal, and as long as I am doing my best – that’s OK.

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Dear Ignorance,

I feel like we’ve met before. You may not look the same, sound the same or act the same, but it is you. I’m sure of it. We met many years ago when my child was just a toddler. Then I bumped into you again during the elementary years. I’m pretty sure we were together briefly when my son was in middle school, and now, here we are meeting again when he is a teenager.

When I went to introduce you to my son, “Ignorance, this is Ryan, Ryan this is…” I slowly trailed off. I saw the look on Ryan’s face, and I knew that he too has met you before, probably more times than I care to count. Introductions aren’t necessary.

I have sat across desks from you, been seated next to you at restaurants and stood in front of you in the grocery line. At every chance encounter, you have made some ridiculous comment that angered, hurt and shocked me. It would have been so easy to just chuck a pencil, a spoon or a can of peas at you and walk away, but I knew if I did, you would keep coming around again and again, hurting my son and other autistic children and adults like him.

Each and every time we meet, I’m astounded by your ability to shock me with your lack of awareness and knowledge. It’s like you have a complete disregard for anyone who does not fit into the “normal” mold you have created. All the times we run into you, I try to be patient, I try to be kind, I try to educate, but for you, ignorance really is bliss.

Sometimes Ignorance, you are in a position of authority. You are suppose to set an example for others to accept differences and see past labels and stereotypes. You claim to want to help my child, you want to see him fit in and be accepted, yet you don’t really see him yourself. How can I count on you to help him when I obviously need to help you first?

What is most frustrating to me Ignorance, is when you are in a place of power or you are in a leadership role, you have an opportunity to shed who you are and provide an example of awareness, inclusion and kindness, but you don’t. I recognize that in some ways you can’t. I mean, being unaware is who you are, which is precisely why as his mother I don’t chuck the can of peas at your head, walk out, slam the door and give up on you. Giving up on you would mean giving up on my son, and that is never going to happen.

I could tell you that since my son and I have been at this for awhile now, we are sick and tired of the same old song and dance, but we aren’t. Yeah, sure some days we both are astounded by the depth of your obliviousness Ignorance, but the only way to stop you is to educate you. We won’t stop, no matter how many times our paths cross, no matter how much damage you do.

I know my son and I will continue to bump into you in various places. I’m not naive enough to believe you will go away, but I do believe that Acceptance, Awareness and Knowledge will one day pave the way for you. Until they do, I will do the work for them. I will lay the path for Acceptance, Awareness and Knowledge one step at a time, until you finally get it.

I may dread every time I see you coming, Ignorance, but I will not run away. I will not duck in a corner and pretend to not see you. I must educate you to see my son so that others around you will see him, too.

My son and I would like to say goodbye to you forever, but unfortunately, we know we will meet again. Each time our paths cross, you provide new insight into the depth of your insensitivity, which helps prepare us for the next time we meet and helps us to see how much more work needs to be done.

As much as I despise you, Ignorance, I have to admit that you inspire me. You make me want more — more education, more awareness, more acceptance, more compassion. You make me work harder so that my son and others with autism may not have to. I guess in some way, I should be grateful to you.

Here’s a head’s up, Ignorance — you are not bliss. You are harmful and unhealthy, and I really thought you should know.

I wish this was goodbye, but, I know it’s more like, until we meet again. My son and I will be waiting. We will be ready. We will prevail. You know why, Ignorance? Because Acceptance, Awareness and Knowledge will always have our backs. And with them, Ignorance cannot win.

Ryan’s Mom

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