Why It Took 19 Years for Me to Be Diagnosed With Autism

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The short and simple answer is: “Because I am a girl,” but as this is a blog post, I will elaborate on this further.

A few years ago, my mom let me watch a video of myself as a baby. In the video, I start from the age of 11 months and it finishes just before my fourth birthday. The first thing you would notice is how adorable I was! The second thing you might notice is my complete lack of interest in other people in the room. One scene played out as follows: I was a toddler, able to sit up. I was sat amongst about 7 million toys, yet focussed intensely on the one I was holding, a small yellow “rattle” with a spinning bow on it. As I span the bow around and around, my grandfather, who was filming, called out to me over and over again.

“Lucy. Lucy!” He even made silly noises, but I was so absorbed in spinning the rattle that I didn’t even acknowledge him. When the ads came on our TV, I stood up, wobbled to the television and pressed my face against the screen until they stopped. Again, no one was able to communicate with me. The rest of the video was much the same. Me doing something, my family trying to catch my attention and failing miserably. I never held eye contact, even when my grandmother got right in my face. If anyone picked me up, I would wriggle until I was let go.

What was even more interesting is that as I aged in the video, very little changed apart from me getting visibly older and using a few more words. Even when I used words though, they seemed to either be nonsense or echoed (technical term is echolalia). The video seemed to show many traits associated with autism, so why did it take so long to diagnose?

I got taken on by one of my peers at school. She taught me what was “cool” and how to dress. I became a chameleon, naturally trying to copy my peers. It is said this “camouflaging” behavior is quite common in girls in general and that autistic girls are also able to do this to some extent. Of course, some people had concerns as I was very introverted, couldn’t write or do basic arithmetic and only had one friend. My mom even took me to see our doctor when I had what appeared to be a “panic attack” at the age of 6. This was back in 1995 though, and the doctor not only didn’t agree that it was an anxiety attack but laughed at my mom saying, “Don’t be ridiculous, children don’t get anxiety!” We now know that this isn’t true, but at the time, my mom felt silly for even suggesting it and as a result tried to ignore the ever-growing pile of other signs that I was presenting.

It didn’t help that my primary school had a policy of only writing the “good things” on our report cards. I’ve found you can only hide behind the veil of “fitting in” for so long before your peers realize that you are, in fact, nothing like them. By the time I was 11, I had two friends (one at school, one at home), but the majority of my peers were starting to shun me, some even picking on me. The final blow came when, aged 12, I had to go to a different school than my friends, lost my grandmother to cancer and moved within a few months of each other. I won’t go into too much detail right now, but my behavior had now become a serious cause for concern. Despite this and my mom reaching out to our doctor for help repeatedly, nothing was done until I was 14 years old, and even then it was just counseling, which wasn’t very effective for an autistic girl who only wanted to talk about rabbits.

Later that year, after the counseling failed to work, I was referred to the local Child and Adolescent Mental Health Services (CAMHS). I would love to tell you that this is where the positive changes began and I got my diagnosis, but that would be a lie. If anything, I deteriorated further as I fell into a dark pit of mental health problems including depression, general anxiety disorder and obsessive compulsive disorder. At 15, I was diagnosed with Tourette syndrome and at age 17 with OCD, but still no autism. I had also become too old for our local CAMHS, but was still too young for the adult mental health service.

After what felt like an eternity, I was referred to the adult service. My psychiatrist basically said that “girls do not get autism” and that I didn’t have autism “because I cried when my Granny died.” He decided that I had a personality disorder instead, but not which one. I have come across a lot of girls later diagnosed as autistic who were given a personality disorder diagnosis earlier in life. It was a long battle to convince him to refer me to someone who had an autism qualification beyond reading the points in the DSM IV, but eventually I went to London, where I was diagnosed with autism. I was 19 years old.

Since my diagnosis, I have learned a lot about autism and can look back and see how I was affected by it. Another specialist explained that while my writing and verbal skills are shockingly good, the majority of my skills are below average and I have been diagnosed with learning difficulties as a result. Again, this often seems to be the way with girls on the spectrum. I have been placed in that grey area of the spectrum. A lot of people question how someone with such difficulties can go unrecognized for so many years. In my opinion, it is because awareness of how autism presents in females has not been researched enough, and as a result, doctors may be looking for more male-associated traits in us, not finding them, then writing it off as a mental health “thing.” That is why I am spending Autism Awareness Month raising awareness about being a female on the autistic spectrum. Although it has taken many years to get female autism recognized, it is starting to be recognized by more and more people. There are also several good books on the subject! A lot of people still may not realize that females can be autistic as well, which is why raising awareness of autism in girls is so important to me.

a young girl in a pink outfit sitting on a bridge
Lucy as a young girl.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Unexpected 'Look' I Got When Explaining My Daughter's Autism and ADHD to an Old Colleague

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They say that the eyes are windows to the soul, and I do believe that your eyes never lie. No matter what emotion we are trying to hide, to fight, to keep in check, the eyes are the big giveaway. I am not talking about the obvious eyes raised heavenwards or goggly-eyed staring, I mean those micro expressions that really give away your inner thoughts.

I recently bumped into someone I worked with about 10 years ago. I have always liked her and the confidence she seemed to always exude, so it was really nice to happen upon her. We asked all the usual catch-up questions about life, family, etc., and of course came a question about my daughter. “How is E doing?” Instead of the “Fine,” “She’s great,” “Growing up fast,” I thought I would be completely honest. I said that she was well but we have had our challenges and she was recently diagnosed with autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD).

I didn’t know how she would react, but I was surprised. She didn’t turn away, she didn’t put on the head-to-one-side “Oh dear” face, she didn’t make the I’m-smiling-a-forced-smile-because-I-really-don’t-know-what-else-to-do face, nor did the Oh-my-that-must-be-awful crumpled face make an appearance. Instead, those lovely, dark eyes never deviated from looking at me, and I could see a very subtle welling up of tears. Nothing over the top, just a genuine empathetic response. I could almost hear what she was thinking — “That must be tough, I’ll try and imagine how I would feel.” It made me relieved, warm towards her and really proud of myself for having the guts to share something so shrouded in mystery, lack of understanding and misconceptions.

She may never know how her genuine, caring reaction helped me when I most needed it. When I saw her the following day (our daughters are at the same holiday club) I thought there would be awkwardness, that she might give a distant wave and scurry off — but no, I was wrong. She came back up to me, said “Hi,” started chatting about how her day had been, other old colleagues she knows. She made me feel I could do this. I have tears in my eyes typing this (not for the first time) because I hadn’t realized how nervous I was about telling friends and family about our lovely girl; how I have perhaps been isolating myself expecting the reaction to be negative. I’m going to write that planned email to our friends and family now, and I hope their responses are as warm as this old friend’s was. Even if I don’t see her for another 10 years, she has made a true, deep impact — thank you for making “the look” you gave me when I spoke about my daughter’s ASD and ADHD so different from what I expected.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When My Daughter Told Me She Knew She Was 'Different'

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My daughter was diagnosed with autism at 3 years old. She is now 4, and much of our life revolves around planning. We plan applied behavior analysis (ABA) appointments, occupational therapy appointments, IEP meetings, swim lessons, play dates and exit strategies, in case things get rough when going out and we need to leave.

However, never once as a mom had I planned on how to explain autism to my daughter. She is only 4 after all; I’d have plenty of time to plan for that conversation later.

Boy, was I ever wrong. I remember the exact moment when I felt my heart stop and my gut twist in knots. It was the exact same moment my daughter looked in my eyes and told me, “Mom, I know I’m different than other kids.”

I blinked rapidly, inhaled a large breath, forcing my thoughts to gather. I couldn’t even get myself together before my daughter interrupted my inner panic attack with her pure awesomeness and said, “I think I may be like Spider-Man or Batman or Darth Vader! But my arm doesn’t have any slime… yet.”

Then off she disappeared around the corner, singing the Spider-Man theme song.

I made a silent plan of action immediately following my daughter’s mind-blowing awareness. My plan is now to make sure my daughter (and others) always see her differences as an ability, not a disability.

If she can see her ability, then Spider-Man, Batman and Darth Vader will have nothing on her.

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Emalie’s daughter.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about a disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When a Boy Ignored a Mom’s Warning to ‘Back Away’ During My Brother’s Meltdown

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To the mother screaming when my brother was having meltdown,

Back away! Get back!” you scream as my 11-year-old brother is having a meltdown at the zoo.

My brother has nonverbal autism that comes along with sensory processing disorder and many meltdowns. We decided to go to the zoo with my sister, brother, ABA therapist and respite worker. I have no fear taking my brother out to public places and really don’t mind what people might think, but something about this situation made me tick. As we were trying to calm my brother, all I could think about was you screaming at your child and other people to back away despite my brother being in a transport chair.

I understand you wanted people to give us space and keep everyone safe, but bringing attention to the situation like that was only making the meltdown worse. I understand you wanted to help, but when you scream at your child, who I assume by his curiosity had most likely never seen a meltdown before, to back up, he may view my brother as a dangerous person. My brother is not by any means a dangerous person, and I was amazed as another child came close to us.

As you were screaming for him to back up, he asked me if my brother was OK. I told him yes, my brother was having a rough time, but he was going to be laughing soon. His next statement was surprising and left me in shock. “I have rough times, too — especially with math.” The parents smiled at me, called the child back, and off went the child. Yes, my brother can have some intense meltdowns, but what you did not see before was a boy smiling with chocolate ice cream all over his mouth, a boy laughing at a bird pooping on his brother’s shoulder, a boy who was excited to go to the zoo.

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Zachary and his brother in autism awareness T-shirts.

My brother’s meltdowns are a small part of his life, a small part of his day you unfortunately had to experience. Every meltdown can be a learning experience for my brother, for my family and me, and everyone who witnesses it such as you and your son. One child gained insight about my brother, and your son could have, too, if you gave him the chance.

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How I Told My Child She’s Autistic

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It’s something all parents with recently-diagnosed children on the spectrum likely ask themselves: How do we tell our kid she is autistic? And should we?

It’s my belief you should. And it doesn’t have to be hard or complicated. Keeping it simple is key.

Three years ago, after my now almost-9-year-old was diagnosed with autism, I wondered how I was going to explain attending appointments for therapy to her, and when she asked why we were going to the pediatrician’s office so often I figured now would probably be as good a time as any.

So I simply told her that we were trying to find some help for her. Because her brain doesn’t work the same way as other people’s — but that’s OK. Not everyone is the same anyway; we all have things we struggle with and things we are good at easily. Autism can be the same. Being autistic can mean that some things that affect others may not affect her; or some things affect her that won’t affect others — and that was why she was struggling. I explained to her about her senses and how we use them all every day, and I got her to think about her own senses and how they affected her. We got to talking then about how she doesn’t like noise, how clothes tickle, how lights are too bright and crowds are tricky.

And she took it really well. In truth, I think my amazing child knew she worked differently from others long before I told her, and it’s not surprising really when I think about it — kids really are innately intelligent and perceptive. In fact, I actually think explaining to her about autism and giving her behavior and sensitivities a label seemed to give her relief and understanding about herself. I believe it helped with her sense of identity and sense of self, and it certainly helped with her frustration levels at not being able to do some things or handle others.

She even exclaimed to me afterwards, “Oh, so that’s why I hate the sand at the beach! That makes so much more sense now, I thought something was wrong with me!”

No, darling, I told her. Nothing is wrong with you. You just take in your surroundings in your own way, and we are learning to support and encourage you so that you are able to make more sense of the world you live in. The world may be overwhelming, but it’s OK because people who feel and see things in another way color our world, just like you color mine.

So I would urge you to tell your children about their autism. Keep it simple and factual. Normalize it as a part of who they are, not a character flaw or a limitation; rather, share their diagnostic label with them to give them wings so they can fly with it. Because I believe shame and secrets can perpetuate the myth that “different” is “wrong,” and we really should be embracing all of our children’s unique neurodiversity — and teaching our children to do the same with themselves.

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Jessica’s daughter.

The Mighty is asking the following: How would you describe your (or a loved one’s) disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

 

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