Catchy title that; 10 reasons I know my son has autism. Okay, it’s been a long while since I wrote a blog post other than a new recipe, review or giveaway. I’ll be honest, I’ve had bloggers block for a while now. Fortunately I had a few posts in the bank and have survived on posting these out just to demonstrate that I’m still here but beneath the surface, 2017 was a hideous year. It was also a wonderful, heart-warming, hopeful year…but the hideousness took it’s toll and I’ve been struggling to kick myself in the butt and get going again.
No! Wait! that’s what this post is about Rebecca, you’re breaking the cycle…keep going.
Earlier posts in the beginning of Glutarama’s existence focused on the drama’s as equally as the recipes. There were posts about Beth’s Diabetes and Coeliac Disease, my fragile mental health and Lewis’ ‘anxiety’. Originally Lewis didn’t have an official diagnosis other than Generalised Anxiety Disorder (GAD). Posts that I wrote about our journey with Lewis, and through Lewis’ eyes were categorised under Anxiety. This I think is partly where I came unstuck. With an official diagnosis on paper of Autism and Sensory Processing Difficulties/Disorder (SPD) and so much I wanted to get off my chest, I worried that I would alienate you my reader.
Further reading: Type 1 Diabetes and us: the full diagnosis story, Coeliac diagnosis – symptoms, impact and life going forward, A day in the life of Diabetes and Coeliac Disease!
However, I’ve made the decision to be selfish and take my blog back a step and start to write about the drama’s within Glutarama. I say selfish, it’s my blog at the end of the day and I can do with it what I wish but after a while you get a sense of what your readers are most interested in. To be fair there’s no avoiding it, the stats are there in black and white. These types of post only get 500+ views whilst my recipes get 6,000+ but that’s okay. Like you, I can also decide what I do and don’t read and if this type of post isn’t for you then that’s fine my love, there’s plenty of delicious posts on here to keep you baking for a year. In the meantime, this type of post is for two people; me (to get things off my chest and process them in broad daylight) and you (the person who’s still reading this now and may be able to relate to some of what I’m typing). If you’re reading this it means I am not alone, you are not alone.
So, to the main subject of this post; ten reasons why I know my son has autism. I ought to make it clear, these are in no particular order, are not hard and fast rules of autism and having similar traits does not mean you, or a loved one is autistic. If you have concerns about anyone close to you then my advice would be to contact your GP.
Eating Habits: Lewis has very particular rules about food and eating. He has a limited range of foods he will eat and will be able to tell instantly if a shop bought product has changed it’s recipe. Take the Gherkin saga with Sainsbury’s, he set up the chair in the living room, with the coffee table in front and a plate of 5 large pickled gherkins with his favourite knife. First bite and DISASTER, the vinegar was different. I tweeted Sainsbury’s and they’d reduced the sugar…great if you’re Jamie Oliver, not if you’re autistic! Other favourites of Lewis are Ben & Jerry’s Phish Food, Chilli con Carne, Buttered thick white slices of bread and polished red apples. Each of these foods has to be presented in the right way, otherwise it irritates Lewis or leads to a meltdown in extreme circumstances.
His ritualistic pickle eating has been ruined @sainsburys and you were the only ones he loved. pic.twitter.com/T4XshHo5Yv
— Glutarama (@Glutarama) November 7, 2017
Clothing: Lewis has a wardrobe of lovely clothes but each week his clean washing pile is the smallest. If left to his own devices Lewis would happily wear the same shorts, t-shirt and totes socks every day. He wore Christmas themed socks for the whole of the summer at lower school with his school shorts. That said, he’s also very happy to be in his Storm Trooper onesie or Pokémon pyjamas (I’m happy about this development as previous to this he loved to be naked wrapped in a fluffy blanket as soon as he got home from school). Certain fabrics are like sandpaper to Lewis and he hates clothes tags, I’ve had to repair many tops where Lewis has simply ripped these out before I’ve had the chance to cut them out carefully.
Communication: Lewis is high functioning and therefore can laugh, cry, joke, sing and most of the time this is appropriate and in context. However, Lewis has a default setting when he is in uncomfortable situations such as new places or meeting new people and there is an alternative setting for when he is in deep discussion. I’ll explain; when Lewis is terribly uncomfortable it’s almost as if you can see an actual dark thunder cloud over his head! his face tightens, his eyes look downwards and his entire body becomes stiff as a board. Conversation is limited to one word answers or total silence. Other times, when Lewis is deep in thought and talking about a favourite topic he gets verbal diarrhoea, which I personally love to listen to and hear what’s going on in his head. Oddly enough, these bursts of communication are very monotone, hardly any eye contact at all and very few pauses for air! But oh my goodness I love to find out what going on in his head, it fascinates me, this was a comment Lewis made in the car on Friday;
My #Lewisism for the day;
Lewis: it’s so hard…
Me: what’s so hard?
Lewis: trying to think up a new letter of the alphabet!— Glutarama (@Glutarama) 31 January 2018
Emotions: Roller coaster springs to mind, but to be fair since going to his specialist school these seem to be improving. Lewis normally has the inability to process his own emotions, there have been occasions where we’ve experienced extreme melt downs and before I understood what was behind these melt downs it was heart breaking, exhausting and utterly bewildering to me. Thanks to support from a therapist I’ve learnt the signs and been able to help Lewis process his emotions. A perfect example recently was when Lewis accidentally hurt his sister. I intervened saying it was an accident, Beth wasn’t fussed and we carried on with what we were doing…then the thunder clouds appeared and you could see Lewis’ body language change. I assessed the situation and realised Lewis was feeling guilty about hurting Beth but with Lewis many of his emotions seem to end with anger, frustration and confusion. I was able to say to Lewis that what he was feeling was guilt and that it was okay to feel that way but Bethany hadn’t been hurt much and she’d forgiven him. By verbalising Lewis’ emotions I’m able to help him process each one and give it a name and a purpose.
Senses: Now technically this is a reference to Lewis’ Sensory Processing Difficulties (SPD) but I attended some autism training recently run by Autism Bedfordshire and CAMHS and it was suggested that over 80% people on the spectrum had SPD. These I like to call Lewis’ super powers, I’m in awe of his amazing ability to smell, hear, taste, touch on an unbelievable scale. Sadly it has its negative side such as the fact he won’t eat certain foods due to the texture, I can cook what I think is an identical chilli (I do tend to thrown things in and hope for the best) but if it tastes slightly different or the texture of the mince is different that’s it, no more dinner time. As I’ve mentioned the littlest of things can irritate Lewis’ skin and I have distinct memories of Lewis being ill on a couple of occasions when he was a toddler and only being able to sit next to him on the floor as he writhed about in discomfort. Just the touch of my reassuring hand on his head or hand would have an extreme reaction. On the plus side we agreed a while ago that his sense of smell (whilst being a major issue; say if someone brought a smelly packed lunch to school) is actually his super power as he can smell enjoyable things that others either can’t or don’t appreciate enough. And he’s awesome at working out who’s clothes belong to who just by smelling them…we ALL have a specific smell to Lewis, and he doesn’t have to sniff us directly to record it!
Interests: I’m not going to call these obsessions because it’s an unfair description so ‘interests’ fits the bill much better. Lewis’ world is his Xbox and YouTube, he follows very specific gaming you tubers (some of whom I thoroughly condone, others I’m not too keen on!) His favourite You Tuber’s pictures are up in his room and he’s slowly collecting all the merchandise too. Speaking of collections he likes the full sets of things (obviously) and collected all the red noses for Comic Relief 2017 and is now into these funny little Pop! figures. Oh, and how could I forget his love of Spiderman and his favourite Spiderman outfit which he loves to wear and cast invisible webs across the room whilst he clambers all over the furniture!
Routines: This is a typical trait of autism and if things don’t go according to plan with a routine it can spell disaster! We have two issues with Lewis and routines. One is creating them, the other is keeping them. As you’ll read further down starting a new routine requires a fair bit of settling in, Lewis has to trust the routine, understand that there are ‘escape routes’ from a routine (this also links into anxiety further down) and be briefed on what’s afoot. Changes to a routine will unnerve Lewis and examples of this can be a different teacher at school, driving a different route, even a family gathering. Christmas, birthdays and other celebrations can be very unnerving for Lewis. People with autism can struggle with imagination and foresight so another issue we have is if Lewis has tried to imagine something in advance and it doesn’t turn out exactly how he’d imagined. It can be quite distressing. A particular example that’s carved into my memory is when he was at Lower school and we went on a day trip to Stibbingron, we dressed in WWII clothes and the children re-enacted an evacuation and arriving in the countryside via stream train. It was an amazing day and Lewis and I loved getting involved. Then as the day drew to a close Lewis’s behaviour went downhill and he became very upset. We’d driven separately as with all school trips so that if needs be Lewis and I could make our excuses and go early. As we drove home Lewis suddenly exclaimed ‘so why were we not staying in the houses we were allocated’ it suddenly hit me! Lewis has gone through the entire re-enactment actually thinking he was being evacuated and was going to stay with a lovely old man and his wife who looked after hens so he could have an egg for his breakfast each morning! THAT, was an eye opener and something I’ll never forget!
Tics: Sadly Lewis has a tic that comes and goes. We find that it can be worse at times of heightened stress or tiredness. For example, over the Christmas holidays he developed his latest tic about 5 days before returning to school and unfortunately it hasn’t completely gone yet. Thankfully it’s not a verbal tic but we’ve had nights where he’s been in tears as he’s tried to sleep and his tic has prevented him from doing so. I’ve even laid there next to him and watched as he’s finally passed out through exhaustion and still ticked in his sleep.
Rules: Lewis is a stickler for rules, unless he doesn’t agree with the rule because it doesn’t suit his needs or logically it’s not a water tight rule! He’s brilliant at keeping me to the speed limit as he’ll soon tell me if I’m doing 32 in a 30 zone and he hates to see other drivers on their mobile phones and we’ve even had to report one of his school taxi drivers as Lewis came home and told me that the taxi driver was on his phone and not wearing his seat belt! In fact, since drafting this post, it’s happened again before I pressed publish;
Anxiety: As I type this bit I could cry…I’m currently sat in a café at a local falconry centre. We bought Bethany and Lewis a Young Falconers Course for Christmas. Lewis adores animals, as do many people with autism, and loves this bird centre. We thought it would be the ideal gift but whilst I type this he is sat next to me having left the group. Lewis’ fear of new places, new people, new sounds can be so disabling and it really saddens me that potentially there could be so many missed opportunities later in life due to his anxiety. Of course I suffer with anxiety too and know just how isolating it can be but where my children are concerned I normally find strength to go places, meet people and hold conversations so I can approach a situation on a totally empathetic level and read situations through Lewis’ eyes.
SUCCESS! I couldn’t leave this post without adding that after some gentle persuasion and the support of the Falconers Club Leader Lewis is now with a wonderful 14yr old volunteer who had taken Lewis under his wing (excuse the pun) and Lewis is currently handling a barn owl.
Well there we go, this post has taken weeks to write, I kid you not. It’s not my best piece of writing, it’s all over the place, the grammar and spelling is probably terrible and I keeping jumping from past to present and back again! So I guess this has been a bit of a real-time diary in places. I’ve tried to be positive too, obviously sometimes its difficult to paint a positive light on things but I’ve tried not to make this about me and the impact all this can have, that’s another post I need to write and get off my chest. At the end of the day, while these traits can be limiting for Lewis in many ways, they can also be liberating, I’ve learnt so much from him about what is and isn’t acceptable, what the world looks like through his eyes and if I genuinely cannot find a reason why he cannot do something then surely that’s my issue, not his right? Everyday I’m learning, everyday I’m learning.
For another invaluable insight into autism, in this case lower functioning with a young diagnosis, you will find this a very useful read by Just Average Jen in her post Autism Awareness Day – Our Reality.
Plus you can find other useful information written by myself and my daughter Bethany who has since been diagnosed autistic too; Autism vs School; the child’s right to an education. a difficult read (possible triggers) about the difficulties accessing an education. My personal experience with autism – Bethany. R. Smith written by Bethany at 15yrs of age. Finally, Autism, Diabetes, Coeliac’s and Mental Health: catchy title eh? a general post that may strike a chord with you and hopefully reassure you that you’re not alone in this.
If you’ve only just happened across my blog Glutarama, then you may also be interested to know this is not the main topic I write about, the majority of my posts relate to free from recipes and food reviews, as our family are affected by Coeliac Disease, egg, dairy other intolerances it keeps me busy in the kitchen, but boy do I have fun experimenting for my family and followers.
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Nice blog you wrote lote of things that I need to know about autism and I understand the behavior of an autistic child.
Thanks
Thank you, I’m glad it’s helped with your understanding.
LOVE this post Rebecca. It’s honest and open and really helps get some insight into being a child with autism as well as a parent having to deal with the anxiety and frustration that comes with it. Lewis sounds clever and smart and interesting and endearing, although I am sure there are days when he is a little overwhelming! You do an incredible job as a parent and he is very VERY lucky to have you. I know it has been tough, not least fighting the system to get what he needs, but it sounds as though his new school is doing a great job too.
A book (as Mel suggests) would be fantastic! x
Thank you Kate, I’m overwhelmed by the lovely reaction I’ve had to this post. It’s quite humbling. Yes, a book is defo on the cards before I leave this mortal plain! ;-)
OMG! The taxi driver! Like Mel I love your honesty in this post. My day job involves me working closely with SEN children and it has opened my eyes a lot. Lewis sounds like an amazing little boy who is extremely lucky to have a great mum like you x BrilliantBlogPosts
Thank you Sweetheart, hadn’t realised you worked with SEN. Oh and yes! THE taxi driver :-O shocking isn’t it! xxx
Hi, Thank you for sharing this. It’s always good to have more information, and experiences to call on. I wanted to write and say I know what you mean. I have an 11yo high functioning autistic son. I am also Bipolar (which is meant to be on the same gene cluster as ASD, so, I have waves of guilt) My son has grown and adapted a lot, but, of course, that’s on a good day, when things go as planned. He doesn’t eat gherkins, but, I fully empathise, since I know I have to buy the exact brand of the foods he will eat. If they are changed, or discontinued, it’s a huge issue. Same when he grows out of a favourite piece of clothing, and they don’t make it anymore. Sorry I am babbling, I felt a need to say something. Thank you for taking the time to share this.
You’re not babbling at all Laura, thank you so much for commenting. The last two days have been a real eye opener, of course I realise we’re not alone, that hundreds and thousands of our children are going through the same every day, but somehow I do feel alone on many occasions and being surrounded by family with neurotypical children you can’t help but compare. What I am learning, is to put the positives on a pedestal and embrace the differences. Both my children have a memory box in the attic, Lewis asked me to put his favourite shorts in their the other day after finally accepting they were threadbare I LOVE this about him….the shorts are now folded safely in his box for future trips down memory lane xxx
I don’t even know where to start… I’ve read your whole post twice and I have loved your honesty, the details you go into, the specifics of Lewis’ personality and my conclusion is you should write a book. A novel, with Lewis’ help, from his perspective, aimed at children. Adults will try to understand what it’s like to be autistic and empathise, or will read Eleanor Oliphant is completely fine and will find her endearing at the end when they couldn’t stand her at the start, but what about children? One of my boys’ best friends is on the spectrum and Crevette can always tell when his friend is not himself / needs a break from their play / hasn’t had medication, but I would love it if there was a book like Tom Gates or David Walliams’ novels that was written from the perspective of a 10yo with autism. Am I just suggesting you write The Curious Incident of the Dog in the Night Time? No, not really. I loved that book all those years ago and it really helped me understand some of the students I so desperately wanted to help at work. What I mean is a book that’s more ‘2018’ with a journalling style, pictures and words… Is Lewis a keen writer? It would be a brilliant read for adults and children. xxx
Wow Mel! What a wonderful thing to say, thank you and thank you for having faith in me being able to write a book with Lewis…I have three book ideas in draft and had planned to use examples of both children but to write it through the eyes of the child is a lovely idea. Who knows hey? xxx
A really helpful read for those of us without direct experience of people with autism. It’s so easy for us to dismiss people as behaving ‘badly’ in public without understanding the context. A handy reminder for us all to be kinder and more understanding. X
Thank you Carly, Lewis has come with me to Sainsbury’s in his big fluffy slippers before and three years ago we walked to the library with Lewis in his slippers…It’s this kind of thing that will turn heads but if they’re comfortable and it’s not offending anyone then why the hell not. My hubby would have died of embarrassment but me….I love the fact Lewis doesn’t see it that way…wish I could be more like him xxx
I loved reading this post from start to finish. Truly fascinating and so interesting. Lewis sounds like the coolest little boy (although I know it can be hard). Nonetheless I know you’re the best mummy for him.
More posts like this please. I loved how real it was and for the first time in a long time I read a blog post visualsing every point and every experience.
Thank you for sharing and helping mums like myself just starting out on such a journey.
Can’t wait for the next instalment. ?
Oh bless you Bunmi, you’re always so lovely, haven’t been in touch for a while, you’re never far from my mind xxx
Great post Rebecca. It’s really helpful and insighful and good to see you sharing your knowledge and expeirences in other areas of your life. Lewis is a great kid and the more people understand autism and how he interacts, the better.
Thank you darling, I love the idea that this post could educate just one person to understand better. It was a difficult post to write and took me weeks, hence the lack of fluidity, but I’m glad I pressed post and made it live xxx
Love this post hun – so much of it resonates as Theo is very much the same!! Always at the end of my phone if you need to offload. X
Thank you darling. It’s the little things that you’re not sure about…’is it, isn’t it’? I’m learning all the time and Lewis is that best teacher xxx