Titles for this blog post ranged from 'it never rains but it pours' to 'PDA and ADHD' or 'the SEN life' before I originally settled on the thrilling one of 'Steph's Two Girls: The Update', but I've since changed the title to mention ADHD and Tics since they are the main theme of this post.
This reminds me of how things used to be back when I first started blogging over eleven years ago - each post was like a simple diary entry, just thoughts spouting off the top of my head about what it was like to be living life with a diagnosis of autism in the family. More recently I've found myself spending more time researching posts and including information to help others. I have a half written post about PDA and ADHD which I hope to finish soon, but as you'll see below, there has been good reason for the delay.
As I've remarked a few times over the years, 'Steph's Two Girls' may not have been the most exciting or obvious choice of website and blog name, but it reflected my gut instinct back then that the diagnosis would also affect our older daughter in some way.
Turns out I was closer to the truth than I ever could have imagined. The past four years have been a big roller coaster for our family for many reasons but the last seven or eight months have been the most intense I've known in my life.
Google has become my best friend as I've embarked on two new extreme learning curves: ADHD last month followed by Tics this month.
Our amazing eldest daughter, super sib as I've often called her, is in GCSE year and will turn 16 next month. She had begun to struggle with work in school during Year 9 - despite being in top sets and achieving well, she was having difficulty with longer written homework tasks or assessments. Lockdown came in term two of her Year 10 and at first she seemed fine, attempting to get on with work which had been set. After a few weeks though, she began to fall behind with handing in work, and her mood dropped.
We communicated with school and tried to offer support but the situation spiralled downwards to a point where our girl was diagnosed with anxiety and depression. Typical teenage issues such as low self-esteem and lack of body confidence were playing a part but we felt there was something more which was feeding in to the problems. That's when I came across an article describing how many teenage girls are diagnosed with anxiety and depression when in fact it could be an underlying condition such as ADHD causing the difficulties.
For eleven years I've been immersed in a world of autism because of our youngest daughter. I've spoken with so many families and seen many different presentations from Asperger's to PDA and everything inbetween and all around. ADHD is a condition I was very aware of but hadn't learnt about in depth. I had heard of the obvious stereotypes - loud, hyperactive boys - and just as I know girls can be autistic, I knew that girls could also have ADHD. But I'd never have guessed our eldest daughter had ADHD. I suspect some people who know her will still not believe it. I found this article 'Do I have ADHD?' really helpful as a starting point when thinking about this diagnosis.
Our eldest is quiet and hard-working, and at school she has rarely done anything which would call for a behaviour consequence. Now I think that she has been trying extra hard to go under the radar for many years, anxious about standing out and being different. When we looked back though, the signs of inattentive ADHD were there from a young age. Subtle, but definitely there. So although this diagnosis was a surprise, it wasn't a shock.
We began to have hope that something would help make her brain clearer and more focussed and we tried medication which is recommended for ADHD, along with medication for anxiety. Then came the shock. All of a sudden last week our girl developed tics out of nowhere, both verbal and movement tics. No indication of any before.
At this stage we are not sure if these have been brought on by medication or by something else, but my googling has led me to a few important points which I thought worth sharing for others in this situation. Tics are probably more common than people realise and whilst many will have heard of Tourettes Syndrome (TS) via the media thanks to the sensationalist nature of those involuntarily using swear words, not all tics lead on to a diagnosis of TS. According to the Tourettes Action website:
Tourette Syndrome is on the spectrum of conditions known as Tic Disorders. Other conditions on this spectrum include:Transient tic disorder or provisional tic disorder –motor tics usually confined to the face and neck although other body parts may be affected; sometimes vocal tics are also present. Tics only last a few weeks or months.Chronic tic disorder – tics tend to persist rather than be transitory and can include blinking, sniffing or neck movements. Tics occur for more than 1 yearTourette Syndrome – multiple motor tics and one or more vocal tics present for at least 12 months although not always concurrently.A tic disorder not specified - tics are present, but do not meet the criteria for any specific tic disorder
This graphic from their website shows the different types of tics which might be present:
Interestingly, clinicians have also seen a marked increase in presentations of sudden and new onset of severe tics and ‘tic-like’ attacks
This is discussed further in both Ticktock Therapy's blog post and a post by Tourettes Hero.
Another possibility is that the sudden onset of tics could be PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) or PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). In a nutshell, these are conditions triggered by a misdirected immune response which results in an inflammation of a brain- but please do check out www.panspandasuk.org for more information.
I've checked with our girl that she is OK with me sharing this news because this is, after all, her story. However I realised that my passion for blogging has been driven by wanting to educate others about PDA so this naturally applies to ADHD and tics/Tourettes too. More information posts will follow once we've had time to get our heads around it all a bit more.
I've always been very open about what's happened to us as a family because I wanted to try to avoid misunderstandings as much as I could. My blog has helped us along the way and hopefully it has helped other families too. Maybe we can help even more people by sharing this kind of information.
For more information about PDA, please read the book shown below:
* this is an affiliate link and I may receive a small commission if you click and go on to buy anything. It won't cost you any extra.
(Other PDA books can be found in my
'Books about the Pathological Demand Avoidance profile of autism' review post.)
To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.
What is PDA (Pathological Demand Avoidance)?
Ten things you need to know about Pathological Demand Avoidance
Does my child have Pathological Demand Avoidance?
The difference between PDA and ODD
Strategies for PDA (Pathological Demand Avoidance)
Pathological Demand Avoidance: Strategies for Schools
Challenging Behaviour and PDA
Is Pathological Demand Avoidance real?
Autism with demand avoidance or Pathological Demand Avoidance?
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Thank you for this. So many struggle to share their struggles but by being so open you help educate others and let others know you are not alone. Thinking of you all so much ❤️
ReplyDeleteAh thanks lovely lady - I know you've helped countless families yourself! x
DeleteThanks for sharing Steph. Reading the post I immediately remembered another post I read some years ago on another blog I follow. A lady by the name of Mel was prescribed anti-anxiety medication and a few weeks later developed dystonia. The first post she wrote about it is here: http://singaporefling-mel.blogspot.com/2012/08/cymgencymbalta-side-effects-making-my.html It may not be related to your daughter's situation at all, but I thought I'd share it just in case.
ReplyDeleteThanks for sharing, always good to read more!
DeleteDear Stephanie,
ReplyDeleteI am a reader of your blog. My younger daughter Ranjana is autistic. My elder daughter is ok but then of late very moody and keeps herself glued to the screen due to lockdown. My sister's son was diagnosed with OCD post lockdown. What I want to highlight after reading your post is that due to lockdown many young teenagers with whom I am close are taking Psychiatric help of medication and counselling. Socislusing with friends have stopped, excessive screen time, and loneliness have led to these difficulties. I think your elder daughter is also going through these phases. The Covid pandemic is something generations of mankind have not faced. The outcomes are also new. I think its not ADHD but simply the environmental scenario. I am be wrong but think what I said to decide what you should do. anxiety, depression, lack of confidance is what the teenagers I know are facing. And all ifvthem are good academically yet cannot balance this new normal. As I write India is hard hit by the second wave and I earnestly am crying out to the Lord to help us. The Lord is my shepherd! Pray for us as we pray for you all. Prayer is our only remedy.
I agree with you that the lockdowns have had a huge effect on our teenagers and anxiety went through the roof for our eldest, so it's possible that she wouldn't have developed tics if it wasn't for this. But the underlying ADHD is definitely there, it's been assessed and tested for.
DeleteSuch a valuable blog for so many parents Steph. Thank you for putting such great tips and facts together.
ReplyDeleteThanks lovely - there's lots more where these came from, just never enough time to write them all!! x
DeleteHi! Just came across your page. We are pretty certain daughter has PDA for years now and we're so exhausted as a family. I've just started the PDA book above and it's like reading about my daughter.
ReplyDeleteJust wanted to mention complex stereotypies in regards to your daughter's tics. My daughter was diagnosed when she was little as she's always had tics present and we were told it was unlikely to be tourettes. Sometimes tics develop through stress especially with exams coming up and everything she's been through. My daughter's tics present more when she's anxious and excited. They can be exhausting for her sometimes too. Going to bookmark your page and have a look through later on. X
Yes, we call that PDA book our 'bible'! Made me cry the first time I read it. Our girl definitely had no sign of tics before this but I agree it could well have been all the stress of late x
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