I love that quote. Whenever I think of a “light bulb” moment I’m immediately taken back to the day we discovered Hyperlexia. For so many months we felt helpless, lost. Neiva was not neurotypical, that we knew, but trying to get an autism diagnosis also had its challenges.
There seemed to be no “typical box” for Neiva.
“The Light Bulb Moment”
Neiva had gone to bed, Paul was still at the office and I was again scrolling through countless autism websites looking for answers. She had just had another particularly stressful day at nursery and I was trying to find specific strategies for coping mechanisms for autism. After scrolling past web pages I’d visited many times before, seeing strategies I’d tried using without success, something in the search results caught my eye. “….A precocious, self-taught ability to read words which appears before age 5, and/or an intense fascination with letters, numbers, logos, maps or visual patterns…..” The light bulb moment! I had somehow stumbled across a small seemingly insignificant page simply titled Hyperlexia UK. I could not believe what I was reading. Neiva ticked every single box.
I wanted to know more. I typed Hyperlexia into Google and found an amazing website ‘And Next Comes L’ a treasure trove of all things hyperlexia. Dyan, its founder, is Mum to a son with hyperlexia and hypernumeracy. When her son received his diagnosis in 2014 she knew nothing of the subject and had to study and research everything herself. Her website is full of information, strategies and practical help to improve communication between parent and child and has been source of real encouragement for me.
Dyan also has a support group on Facebook which again has been a huge help and, despite the time difference between here in the U.K. and Dyan in Canada, she responds to any questions we may have.
She really is an amazing lady.
Hello Dyan, thank you for taking the time to talk to me today. Would you tell us a little about yourself?
Sure! First of all, my name is pronounced just like Diane. I just want to get that out of the way so no one mispronounces my name while reading through this interview…
I was born and raised in the Canadian prairies and married my high school sweetheart. We have two boys, J and K, who are currently ages 8 and 6. J is the son who is diagnosed with autism, hyperlexia, hypernumeracy, sensory processing disorder, and, most recently, ADHD hyperactive/impulsive subtype.
I am also a part time piano teacher, something that I have been doing since well before having kids of my own. And then, of course, I also write a blog, which I love dearly.
Just for anyone reading here that is unfamiliar with the term “hyperlexia” how would you describe it?
Well, hyperlexia is actually something I find very difficult to sum up into a short description.
Basically, though, hyperlexia is a self-taught early reader who has significant difficulties with verbal language, usually accompanied by an intense fascination with letters (and/or sometimes numbers, maps, or logos). So my son could read you just about any word at age two, but he couldn’t carry on a conversation, answer questions appropriately, or comprehend non-written instructions.
It is important to point out, though, that hyperlexia is not a standalone diagnosis and is usually diagnosed alongside something like autism. I like to think of hyperlexia as a practical label instead of a diagnosis.
Could you take us back to the beginning, what lead you to discover hyperlexia?
Oh goodness, I’m not even sure where to start to answer this question. We always knew there was something different – something special – about J. I vividly remember him at age 4.5 months. He had just learned to sit up independently, a milestone most babies don’t reach until closer to 6 months or later, and he would sit quietly, carefully flipping through books, one page at a time. Not just any books, but full on chapter books with delicate pages like Harry Potter. He wouldn’t make any noises or anything. He would just sit there turning the pages one by one. We had always read to him since birth so his love of books came naturally, but the way he flipped through those pages like a little bookworm was so mesmerizing and fascinating.
Around 18 months or so, while my husband was away for work, my father-in-law came over to play with J for a bit. My father-in-law pulled out a set of chunky 3D plastic alphabet letters and numbers that my mother-in-law had found at a garage sale to play with. J could literally not stop playing with them ever since that little play date. He would sleep with them, carry them, hug them, and eventually started to name them. You can only imagine how shocked I was when he started saying the sounds “Rrrr” like a fiesty pirate and “Dubba-dubba” for W in the cutest little voice.
Sometime around this point, J also insisted I reread Dr. Seuss’ ABCs over and over, until the point that holding the book in my hands was pointless because I already had the book fully memorized. He was also comforted by me singing the ABC song from the Signing Time video, a video he watched probably close to a million times.
Then just shortly before his second birthday, he started spelling out full on words with alphabet blocks and reading big words from books.
By age 2.5, he was reading those early reader books all by himself. Then shortly after, was writing out words on his own with chalk.
Obviously, I thought he was brilliant and he is, but after he turned three, concerns started to creep in. He would have frequent meltdowns. He would hyper focus on his letters and tune the rest of the world out. His conversation was practically non-existent and his speech relied heavily on echoing phrases from his favourite books or movies.
So by age four, when my younger son started carrying on better conversations with me than J could, I pushed to start the referral process for an autism diagnosis.
Shortly after his fifth birthday, he received that autism diagnosis. And that is when my world completely changed because the words hyperlexia and hypernumeracy were first introduced to me during his assessment. The sense of relief I felt when I heard those words is indescribable. I am so thankful that the psychologist introduced those terms to me because I could finally name what J has.
I am still saddened though that I never stumbled upon the term hyperlexia before this moment. It angered me, actually, which is why I choose to write as much as I can on the topic now.
So now you had a diagnosis and now you had a name. I feel very lucky because when I started my research, I found you! Obviously you didn’t have that. I’m guessing there wasn’t much else out there? When did you realise that there were other parents out there like you struggling to make sense of hyperlexia?
There was certainly next to nothing on hypernumeracy when I first searched google. I think it was like 60 search results total or something. However, there were a few things on hyperlexia I could find, but not quite what I was looking for. I so desperately wanted to connect with other parents and read about their journeys, their strategies, and what it is like to watch a hyperlexic child grow up. I was able to find some of that when I joined the Hyperlexia Parents Facebook group. I scrolled through photo after photo of what could have easily been a picture of my son. For once, I did not feel alone.
I think the pivotal moment for me, however though, was when a mother reached out to me on Instagram. I’m not even 100% sure how she found me, but I am thankful that she did. She literally stumbled upon hyperlexia because of something I posted on Instagram and it changed her world. I could feel her relief when I read her messages. She had finally had her aha moment and I helped her get to that, which is an incredibly rewarding feeling. I have since had countless encounters just like this one, even on the local level.
So I guess I realized that there were other parents out there struggling, just like me, after I had the confidence to start writing and sharing about hyperlexia. That is, afterall, when I started to get emails and messages asking for help and advice.
Was this the motivation behind starting And Next Comes L? How did the website start?
Actually, no. I started my blog in February 2013, after some nudges from a couple of mom friends. They always saw me posting these fun sensory activities on my Facebook profile and kept urging me to write a blog. So it started off purely as a hobby for me and as a place for me to share some of the fun things the kids and I did together. No fancy photos or anything. Rather embarrassing to look back at, honestly, but I had no idea what my blog would evolve into years later!
However, a month or two after J’s diagnosis, I knew that my focus for my blog had to shift. My disgust with the lack of hyperlexia resources and information was a huge motivating factor in the decision to shift my blog’s focus. I was terrified to be so open and raw about this part of our life though. I hesitated to hit publish on that very first hyperlexia post of mine. I think I was even in tears after I hit publish because I was just so nervous. However, it is a change that I am glad I made. I have been able to connect and help so many other struggling parents because of my decision to finally hit publish on that hyperlexia article.
Id just like to say Dyan how invaluable your website is to me. I would feel totally lost and overwhelmed if I didn’t have this to turn to. The work that you have put in from almost nothing is just remarkable. Are you seeing hyperlexia becoming more recognised by the education and medical professions now then when you started or do you feel there still a long way to go?
You are much too kind. I am so happy to hear that my blog has had the impact that it has had. It is something I never imagined would happen when I first started it.
Unfortunately, I have not seen any changes in hyperlexia awareness over the years. Having said that, though, I do know of a psychologist working on developing a hyperlexia questionnaire and a filmmaker working on a documentary on hyperlexia. Would I know about these things if it weren’t for my blog, though? Probably not.
My wish though is that more professionals know hyperlexia even exists. I would also eventually love to see it be a standalone diagnosis one day.
A stand alone diagnosis is my greatest wish too. So, what’s next for you? Do you have any ongoing projects that you can share with us?
Well, I like to wing most things so no major plans at the moment. My goal is still to work on my blog as much as I can. I would also like to go back and update my hyperlexia ebook. Maybe even self-publish it as a paperback one day. But it’s hard to find time to accomplish all of the ideas in my head!
I would love to see a book of yours on my shelf of hyperlexia references. That would be totally amazing. So for any parent reading this who feel their child may have hyperlexia, what would you encourage them to do first and foremost?
There are two pieces of advice I always like to give when it comes to hyperlexia.
First, write it out! Your child’s gift is to decode words so use it to your advantage. Invest in a whiteboard too! They’re such a valuable tool for these kids and are perfect for writing out steps and instructions to help them be successful.
Second, do not discourage your child’s interests or intense fascinations. Embrace those letters! Use those interests to teach new skills and help support your child. (Read Dyan’s advice for hyperlexia parents here).
But I also highly suggest advocating hard for your hyperlexic child. Guaranteed, you will encounter numerous professionals and educators who will have never heard of hyperlexia. You will need to teach them about hyperlexia, unfortunately. It will help make it easier for your child’s needs to be met. FYI, I may or may not be known for handing out 60+ page documents on hyperlexia to people who have worked with J over the years…
You and I know just how extraordinary our children are, we love sharing stories one hyperlexia parent to another, but to anyone else reading this, would you give us an example of a proud mama moment or moments for you?
Goodness, it is hard to pick just one proud moment, but he has taught me so much over the years. He has shown me how to appreciate the beauty of simple things. He has made me more patient and calm. His intense love for things like math and Pokemon remind me how important it is to celebrate diversity. It is my hope that we can all be that comfortable being ourselves.
It’s been such a privilege for me to interview Dyan. She is a tireless ambassador for our wonderful little but ever growing community and I’m forever thankful to her. If any of this resonates with you as a parent/carer and you feel that your child may have hyperlexia, I would encourage you to visit her website for more information or pop a little comment below.
You may be at the start of an incredible journey.
I could not let this moment pass by without linking to one of my favourite ever posts from Dyan. Do you want to know how she came up with the name for her blog, And Next Comes L? It is probably the sweetest most beautiful reason in the world and you can read about it here.