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What I Wish Others Understood About My Son's Special Needs

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My son is diagnosed on the autism spectrum, but it is quite common for people who are not around him often to state they would never know he has autism, or if they are aware, they’ll comment how amazingly he is doing, which is most definitely true. I realize I should probably be comforted by these comments, that I should focus on how far my child has come in the last few years, that I should recognize and appreciate the simple fact that my son is an exceptional little boy in so many ways. But sometimes it is frustrating for me as his mother, as the person who spends every single day and most of his waking hours with him, to feel the need to explain both myself and my child to pretty much everyone we know.

Without being in this world every day, without living each and every morning, afternoon and evening, without managing some of our day-to-day challenges or unique situations, I feel it is nearly impossible to explain certain traits or characteristics that impact my son, because many times the meltdowns or difficulties are the culmination of so many factors that other people don’t experience the same way.

There are traits and characteristics my son has that can be quite common for those on the autism spectrum; some of these have become less prevalent over time, yet many of these traits are simply a part of who he is, and we accept what he needs and how we must adjust accordingly in order to allow him to enjoy life and grow as a person. My child struggles with sensory processing and can become easily overwhelmed, especially during major changes in our schedules, routines and environment. This is most evident during the holiday seasons, when school schedules are reduced, long breaks from our normal routine occur and we are spending our time at family gatherings and parties or traveling more often away from home. Because my son is doing so well, has grown so much and continues to expand his capabilities in all areas, it can be easy to forget how challenging certain situations can be for him. Even my husband and I are guilty of this, because we often fail to recognize our daily lives are very structured and routine.

Explaining sensory overload to even those closest to us is hard; as a mom, I still worry about what other people might think. I assume most people probably consider some of what we allow during holidays or vacations as simply “lazy” or “permissive” parenting — yet the truth is there are real reasons behind why we do what we do, why we make accommodations, and why my son may struggle in new and different environments. For someone like my son, noises can be unbearable, so the crowds and the sensory overload that often accompany family gatherings can be difficult.

Sometimes, he needs to have downtime; he needs to have a safe place to retreat to and regroup. This may entail an iPad movie or game with headphones, and it may look like he is ignoring everyone or being rude. He may not be able to sit at a family dinner; he can be picky about what he eats, so we pack food every time we leave the house. He requires physical activity and can have trouble if he is unable to get the type of input he needs to regulate his body. He thrives in structured environments, and the lack of structure that accompanies our holidays or down time can seem to be fine to outsiders for a day, but we often experience the impact of the lack of structure during the following day or days. He can participate and have fun in the majority of outings and experiences we do as a family, but it is not without its challenges for him. If we sleep out somewhere, have a different bedtime, do not have our normal routines, visit with a large number of people and experience many new or different venues or things, my son will usually go along with it and have a wonderful time — yet the next day or two can be more challenging than we have seen in a long time as a result.

I believe in seeing the good, in focusing on the positive and on appreciating the blessings in life. Just because I recognize my son’s challenges does not mean I am focusing on the negative. It also does not mean I am underestimating my son and what he is and will continue to be capable of achieving. He is a rock star, he is amazing, he continues to wow us daily, and we are truly proud of who he is. But being proud of who my son is also requires me, as his mom, to recognize when he needs a break, when we are pushing the limits, when we are setting both him and ourselves up for failure and distress.

I cannot make the world easy and perfect for my child; he needs to exist in the real world and deal with frustrations and difficulties as we all do, but I can be aware and respectful of what we can do to help him be his best self and to allow him to progress at his own pace. Not acknowledging these needs of my child, in my mind, is no different than expecting a 1-year-old to go without naps all day long because of family events or schedules; it is simply not realistic, usually results in tantrums and a lot of crying, and benefits no one.

So here is where we are today. Maybe we can say yes to one event, but no to another, because we recognize we need a break in between. Perhaps we can do one party, but not both. Maybe we let our child eat dinner alone with an iPad, because making sure he actually eats is more important to us than whether or not he is sitting with the rest of the family. Most likely my son won’t be dressed up for the holidays, because he is so sensitive to most clothing materials, shoes and fabrics that we gave up that fight a long time ago. It is evident to me my son has no need to apologize for who he is and what he needs, and that the pressure of being the type of parent I think is expected — or not wanting to let anyone down by saying no to an invitation, or having to leave early — is what can create the stress in our lives. It’s just I want so badly for those around us to truly understand.

My deepest wish would be that we did not feel the need to explain away what we need as individuals in order to be our best selves. That acceptance, and not just awareness, was truly prevalent. In my eyes, we are all doing the best we can, and I think that is pretty darn great.

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Learning You Might Have Autism as an Adult

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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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What Happens When We Judge Children With Behavior Challenges

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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.

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

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Getting an Autism Diagnosis Meant My Daughter Could Receive the Emotional Support She Needs

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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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There Are Still People Who Don't Believe in Autism

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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.

Follow this journey on Anonymously Autistic.

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I'm Autistic. I'm Not 'Normal.' And That's OK.

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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.

Self-compassion.

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

Follow this journey on Anonymously Autistic.

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