To My Parents, Who Supported Me When I First Suspected I Was Autistic

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Why These Negative Responses to My Child’s Autism No Longer Anger Me

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My eldest daughter has autism, she’s 4 years old and was diagnosed a year ago. She has pervasive developmental disorder (PDD), sensory issues, a speech delay, impulse control issues and other very small difficulties. On the outside she looks like a perfect blend between my husband and me, and her and her little sister look like clones.

Since her diagnosis, we’ve shared with several people about her autism. We’ve shared with friends, parents on her preschool class, parents of the neighbor kids whom she plays with in our building’s backyard, and even some strangers when we’ve felt it’s necessary.

This has led to various responses, many of which could be considered unfortunate, inappropriate or just plain rude. I’ve been told, “she does’t look autistic,” “I never would’ve guessed,” “she looks so normal,” “are you sure?” “I’m sorry,” and many other similar remarks. Many of those comments made me angry at first, but later, as I tried to understand what the person who said it might have been thinking — or what he/she might have really wanted to say — I stopped being angry.

I’ve read a lot about autism  — in books, blogs, Facebook groups, etc. Many parents seem offended by these comments, these and many others I haven’t heard yet. I understand why they get angry, upset, sad and the many other feelings that parents of children on the autism spectrum have to deal with when someone says something unkind about their child. But, I’ve managed to find a way not to get angry.

I’ve come to realize most people are not trying to be mean, they might just be ignorant about autism. I don’t say this in a pejorative sense, I believe they don’t know what they’re talking about. Many people don’t know what autism means; they might think it’s a disease, or believe you can get autism, or they simply know nothing about it.

This means parents of children on the autism spectrum (or families) have to realize how important autism awareness is. Our society needs us to advocate for our children so others can understand what autism really looks like, our everyday experiences, what is true and what is a myth. It means we have a lot of work to do, and it also means we need to be patient, and understand that ignorance can be our worst enemy.

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JT Firestarters is Made and Run By a Man With Autism

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Daniel Toops, a man with autism, created JT Firestarters as a way to earn money and gain independence.

Read the full transcript:

This Man With Autism’s Creation Sparks a Hot Business.

Daniel Toops, 21, is nonverbal and on the autism spectrum.

Toops started JT Firestarters in 2015 as a way to earn money and gain independence.

JT Firestarters are an easy and inexpensive way to start a fire.

Toops runs all aspects of JT Firestarters with the help of his team.

Toops makes the firestarters by hand using recycled materials.

Materials include cardboard egg cartons, shredded paper, drying lint and candle wax.

Toops’ local community in Bellevue, Iowa helps out by donating supplies.

Firestarters are sold in 70 stores across IA, IL, KY, MN and WI.

The company hopes to hire more people with disabilities as they grow.

To learn more, visit justtoops.com.

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I Feel Like a Puzzle Piece That Doesn't Fit Where I 'Should'

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How I Think as an Autistic Person

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As an autistic person I think differently from neurotypicals. I am a visual thinker, which means I think in pictures. I also remember a lot of things really well; for instance, I can go back to a memory and remember different people, sounds, colors, etc. I am also a literal thinker, which means I sometimes have trouble understanding things when they are unclear and understanding things like sarcasm, jokes and idioms.

Sometimes I feel some neurotypical people don’t understand this. They might think I am “making up excuses” when I don’t understand. I need clear instructions. I have had some neurotypical friends say that I’m not a child, and that I should be able to figure things out on my own. But this doesn’t work well for me. I understand best when things are clear.

This can be frustrating for me because I don’t feel understood. I become very anxious and I partially shut down. I may recover and act happy, but on the inside I am upset and anxious. I can lose trust with the person, and have anxiety about seeing them again. They may wonder why I’m anxious — it’s because there was a misunderstanding.

I used to be on a swim team. My coach said something about backstroke and I interpreted it as I needed to turn over on my stomach once I reached the finish line. I did this, and I got disqualified. One of the coaches told me, “Makayla, why did you do that?” I was confused and upset. At some point I almost started crying in the gym.

I also process things more slowly than some other people might. My teacher will sometimes ask me a question in class after watching an educational video, and I won’t be ready to give an answer because I’m still be processing the information from the video. Once I have processed the information, I will be ready to give an answer.

It can take me longer to learn things. I also like doing things over and over again, and this helps me learn. I am in a dog club, and I practice showmanship. The dog’s owner teaches me (she’s a great teacher, she is very patient with me) and I am currently learning how to hold the leash correctly and how to try to keep the dog’s attention on me. I practice the showmanship pattern over and over again, and I become more comfortable each time I do it.

This is how I think as an autistic person.

Follow this journey on Ausomely Autistic.

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My Experience Being a Woman and Going Through the Autism Diagnosis Process

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You don’t know me. I might be like you, or I might not. But, if you’re also female and on the spectrum — or think that you may be — there’s one thing we have in common: at some point we have either gone through or are thinking about going through the autism diagnosis process.

I am a 38-year-old, cheesecake-loving, twirly dancing, catastrophically bad singing, Twitter-obsessive, female advocate of all things that would make owing a pet dragon a reality. I am autistic. I don’t have “mild” Asperger’s, nor is it just a “personality” thing. Despite being referred to as “high-functioning,” it’s not just a little thing that affects some parts of my life. I am “actually autistic.” And the way I first discovered this? I was first tipped off to the fact I may be autistic by a quiz on Facebook and a character on a children’s television show in the UK called “Tracy Beaker Returns” (as the late, great Carrie Fisher once said, “If my life wasn’t funny it’d just be true”).

By the time I discovered I was on the autism spectrum, I was 31 years old living independently in a different country and had recently been hospitalized from being significantly ill. I didn’t understand what autism really was, and it’s not something I had experience with as part of my day-to-day. So to go from not knowing the name of the thing to having this world suddenly explode into existence around me was quite the colorfully volcanic existential crisis.

Once you suspect you may be on the autism spectrum, making the decision to go forward with a diagnosis might be one of the biggest and most life-affecting choices you will make. If you’re like me, the exact moment you realized you may have found the answer to why you have always felt so different will be indelibly marked in your memory. You stand at a crossroads at the start of a journey towards fully knowing who you are. Some people are happy to self-diagnose, and just having that understanding works for them. I depend more on absolutes; maybe you do, too. There is no right way for every person, so you can only go with your gut instinct.

Because conventional thinking and diagnosis still seem to lean towards boys who are more often identified autistic as young children, there are still vast amounts of girls and women out there who remain undiagnosed. Finding out information about the diagnostic process is not easy. There are things I wish I had been told. And I believe that — in the name of awareness — no one else should find out they are autistic via Facebook and the BBC scriptwriters. For anyone out there who is thinking about starting this journey, I’ll share some options to prepare yourself based on my experiences.

In the U.S., you’re often advised to contact your general practitioner (GP) to discuss your concerns and ask to be referred to an appropriate psychologist or social worker. In the UK, where I was diagnosed, you can go privately, but my understanding is that lots of GPs have historically insisted you must be assessed by the National Health Service (NHS). This can be a long and difficult path, and you can find useful information via the National Autistic Society. I can’t speak for the experience in the U.S., but as the diagnostic tools are universal, I imagine the steps of how to prepare yourself personally can be much the same. Unlike the diagnosis of physical ailments, where a doctor will listen to your symptoms and explain your illness, you may need to explain to every health professional you encounter why you think you are on the spectrum. You will be asked to complete questionnaires like the Autism Spectrum Quotient.

In my experience, there were three gate-keepers between me and my diagnosis (in the UK):

  • My GP
  • Local Commissioning Mental Health Team
  • Autism Spectrum Diagnosis Service

Throughout the journey you may come up against issues such as, “we don’t like to label people,” or a failure to recognize what the condition looks like in females. The entire process, with waiting lists, can take some time. It can be hard, and you will need to persevere to see it to completion. Work is being done to improve the experience and waiting times of adults going through the system, and the NHS is world-class in its services, but it remains that it will not be easy.

Keep in mind that it is your right to receive an appropriate diagnosis and your right to understand who you are. And you must advocate for yourself. So make sure you are fully prepared for appointments. Take notes with you if necessary and be prepared to ask for second opinions if you disagree.

Once you have your diagnosis, it may take time to process it emotionally. Regardless of what you knew that you knew, it marks both an end point and a new beginning. You’ll have difficult days and you may experience a plethora of acceptance and grief for the life that you had before, the difficulties you have encountered and the friendships you may have lost. But finding peace is possible.

Vast amounts of work needs to be done to improve awareness and acceptance of all facets of the autism spectrum and what it looks like among the community. There are still huge challenges ahead, but I am confident that the more people are prepared to speak out, the more acceptance will be garnered for our community. Maybe if you are like me, you will see it as something to be celebrated and looked forward to, because we all exist on a spectrum of humanity that merges into one another, and we can only operate as such when we become a truly cohesive society.

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