Little curly girl blowing dandelion.

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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A Letter to the Ignorance My Son and Others in the Autism Community Face

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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.

Sincerely,
Ryan’s Mom

Follow this journey on The AWEnesty Of Autism.

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'Adulting' as Someone on the Autism Spectrum

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When I was 16 years old  only a year after I was diagnosed as being on the autism spectrum — I asked to get my driver’s permit. My parents were worried I wouldn’t be able to handle driving. They made me wait another year before they finally decided to allow me to try. It took what seemed like over a hundred laps around the local corporate center for me to even try to venture into traffic. But over time, I learned the main skills I needed. I passed my driver’s test on the first try.

When I graduated high school, I wasn’t ready for college. So instead, I focused on learning some more life skills while volunteering in the community. It took some time and hard work. But after working on this for a few years, I finally moved out of my parents’ house.

I still needed to pay the bills.

I didn’t settle on a perfect job right away. It took some time to find a good fit. Yet, after many practice (and real) interviews, I landed a part-time position that I have the ability to do well in.

And when I was finally ready, I decided to try going back to school. Yes, I’m only taking one class at a time. But I’m getting good grades, and I’m currently signed up for my third class!

I may be on the autism spectrum. But that does not mean I’m incapable of things. It may mean I do things a bit more slowly. It could be that I do things in a different way. But I’m still capable.

I can’t speak for others on the autism spectrum or predict the future in any way. I would like to remind parents of one thing, though. I want to tell parents to please, never give up hope. I needed a gentle push here and there, and it took some extra time. But I’m so glad my parents gave me a chance.

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Temple Grandin Answers Your Questions About Autism

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Dr. Temple Grandin is one of the greatest autism advocates of our time. A six-time author with a Ph.D. in animal studies, Grandin is a living example of the potential of the autism community.

We asked you, our autism community, what you would ask Dr. Grandin if given the chance. We took questions from autistic individuals and their parents, and asked Dr. Grandin her thoughts. Here’s what she had to say.

The Mighty Readers: What is your advice for motivating a child with autism who is not motivated?

Temple Grandin: Well, I’m going to assume that this is not a 3-year-old. For a 3-year old I can give you a standard answer, and that’s lot of early intervention. Now I don’t know anything about this child, so I’m just going to make up a child… Let’s say a fourth-grade fully verbal child. Motivate him through his fixations. If he likes trains, use that motivation – that interest in trains – to motivate mathematics, motivate reading. Play games involving trains, read about the history of railroads. Make an associative link back into his fixations and then keep broadening it out.

When I was in fourth grade, I would draw the same horse head over and over again. I was encouraged to draw lots of different things. But take their fixation and broaden it. Transportation is a real common fixation – trains, cars and airplanes – because of the motion. A lot of these kids really like the motion.

If you have a 2-year old that’s not talking, [first check if they’re] deaf, and [then] start early educational intervention – 20 hours a week. You’ve got to teach them words. And, the other thing you’ve got to teach these kids [is] how to take turns. That was taught to me with board games. They’ve got to learn how to wait and take their turn.

How can you help a child with autism cope with their fears?

TG: Well, I had a lot of anxiety issues. One of the things you can do is give them some choices. When I was 15, I was afraid to go to my aunt’s ranch, so my mother gave me a choice. I could go for a week or I could go all summer. Not going was not going to be one of the choices. Give the child some choices, but becoming a recluse in your room is not one of the choices. That’s one place that my family, my school, just drew a line, and that was just not allowed. You can say, “You can have a choice – you can do boy scouts or you can do robotics.” Give the child some choices, but you’re going to have to get out and do some things.

As an adult, how do you deal with sensory input? Has it changed over time?

TG: Yes, it’s gotten better over time. I still have problems with touch sensitivity. I mean, they seem to be cheapening up the clothes and making the cotton more rough. You know finding pants that don’t itch is getting to be more and more of a big chore. Sound sensitivity for me has just become a nuisance, but I still have a lot of problems with screening out background noise. I’m functionally deaf in noisy restaurants, and my hearing has gotten worse as I’ve gotten older. Sensory issues are extremely variable. Now some people have visual sensitivity problems, other people have touch sensitivity problems. My problems were mainly noise sensitivity, touch sensitivity. One of the areas I think is the number one area for research is how to treat sensory issues. It would be my big top priority, and in order to study these issues they have to be looked at by particular sensitivity problems – sound sensitivity, rough clothing sensitivity, problems with bright lights. If you blob it all together you’re not going to get any decent results.

What advice would you give parents whose children have recently been diagnosed with autism?

TG: Usually in younger children they get diagnosed because they’ve got speech delay. You have got to get into good early intervention, and I’ve got a book that’s very good for that, “The Way I See It.” Lots of short, easy-to-read chapters. There’s another book called “Autism Breakthrough,” if you’ve got to start working with a child now. If you have a kid that’s not talking, that’s 3 years old, don’t wait. Start working with this kid now, teach them turn taking and words. Do not let them zone out all day on electronics, absolutely not. If there is some game on a phone, that phone needs to physically be passed back and forth. These kids have got to learn how to wait and take their turn.

Now an older kid normally is diagnosed because he is getting bullied and having social problems in school and is usually fully verbal. I had friends that shared interests. Get them involved in Boy Scouts and FFA, in robotics, in art, in band, in theater – because with these specialized interests that’s where they are going to have friends. And I do a lot of discussion on that in one of my books, “Thinking in Pictures.”

Is handling fame and celebrity similar to coping with autism?

TG: Well, I figure it’s a responsibility. I’ve got to make sure I’m always on my very, very best behavior. I’ve always got to be on good behavior, no matter how tired I get.

How can parents help their nonverbal child communicate?

TG: Well, let’s say you’ve worked on this kid and he’s not learning to talk, then you need to get a communication device. There are some kids who are nonverbal who can learn to type independently and actually have locked-in syndrome – where there is a good brain hidden in there and they may not talk but they can learn how to type. A really good book to read is Tito Mukhopadhyay’s “How Can I Talk If My Lips Don’t Move?” Tito describes a sensory jumbled up world. I consider that book essential reading if you’re working with older children and adults who are nonverbal because you can understand some of the sensory issues these individuals are up against.

What direction do you think awareness should be focused on?

TG: We have different issues. The early intervention, the awareness, I think has gotten a lot better, but I still go to certain parts of the country where the child is getting to first grade without getting any kind of early education. They’re just allowed to zone out on electronics and the TV all day.

I think we need to start, also, focusing on what people with autism can do. The way I got my business started, I showed off a portfolio of my work. In the 1970s when I started in the cattle industry, being a woman was a much bigger issue than being autistic. Being a woman, I had to be five times better than a man. I’ve been horrified over the years on the big mistakes that guys can make on jobs.

How can employers help their employees who are on the spectrum?

TG: There’s a very simple thing that employers can do to help people that have developmental differences. If today, I was hired by Starbucks and I got to tear that coffee machine down, clean it and put it back together again, I would need a pilot’s checklist of the steps to clean it, tear it down and get it reassembled – because I do not have a good working memory. So for a task that involves sequence, I would need a pilot’s checklist.

Also, if they make a social mistake, let’s say they’re working in a retail store and they stand too close to customers, you’ve got to just demonstrate, “This is how you do it. Watch Suzy, how she interacts with customers and then copy that.” It’s like instructing someone how to behave in a foreign country.

How can parents explain the advantages of autism to their children?

TG: Find something they are good at. There are some people with autism that are very good at math or very good at art. My ability in art, when I was a young child, was always greatly encouraged. Build up on the thing the kid is good at.

Are there different kinds of autistic minds?

TG: I talked about this in my book, “The Autistic Brain.” The visual thinkers like me, there are art minds, the mathematical minds, more of the patterned thinkers – kids who are good at math, good at programming, engineering – and then the writer minds. These differences often show up around third or fourth grade.

How can people with autism manage anxiety?

TG: Us visual thinkers, we tend to be really anxious. I do take medication. I take antidepressants. Low doses of antidepressants absolutely saved me, and I discussed that in my book, “Thinking in Pictures.” Even though [the book] is old, that information is still accurate. Read the chapter that’s called “A Believer in Biochemistry.” Some of the worst anxiety problems tend to be in the kids with the art minds, the visual thinkers.

Questions and replies have been edited for length and clarity.

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