In March this year, Little Man had his confirmation of being autistic. If you know us, or have read my Instagram posts, I was thinking he could be on the autistic spectrum from around a year old, though I wasn’t sure. More dots were joined until we had confirmation the nursery were thinking the same, when he was 17 months.
I had been searching for answers from 4 months, due to high levels of crying, sensitivity to being put down, reactivity to touch (especially being held by others not his parents), a very low pain threshold, issues with dressing and wind/water from just a few months old, and sleep that went off the charts from 6 months old. Those were the main things, there were many others (and they are not diagnostic tools, only what we and many others may experience). At the time I had him pegged initially as “highly sensitive”. We just knew something was different. I had LM at 38, so have handled, looked after and spent time with many friends and families babies over these years. LM behaved, as a baby, more like a toddler, and that’s what perplexed me the most. I’m also an OT, and though not a pediatric one, we assess people based on their physical but also cognitive abilities, and it’s the cognitive component that has always really interested me. Really though, behind it all was just mummy instinct. Then, in the midst of trying to manage these multi support needs, you are mainly told that more milk will solve the sleep, that he appears normal so must be (the indirect implication being we simply weren’t managing as his parents), and the classic “all kids do that”. Frequency, intensity, duration, reason for behavior: there are comparables yes, but it won’t be the same as other kids. That’s why they’ve received their diagnosis! It’s as though, thinking it’s in some form of solidarity that people want to say “me too”, but there isn’t always a “me too” for everything. Parenting is hard for everyone, it doesn’t mean that we all have the same struggles. It’s invalidating personified, to tell people that what they are experiencing is the same as you, when it highly likely isn’t, due to the factors of frequency, intensity, duration and REASON for the behaviour I’ve mentioned. It doesn’t make a parent feel better. It also undermines anyone who has an autism diagnosis and the challenges they face, big time.
At 17 months, as I say, the nursery gave me an indication that they felt the same re LM being potentially autistic. This was golden. Having been essentially gaslit for so long, even if “well-intentioned” (it isn’t and we need to change our view point on this- it’s so damaging), it gave me the confidence I needed to push forward on the services that mattered. We hadn’t been believed by our first GP, where I had highlighted issues around sleep and missed milestones, so I switched practices, was lucky to get an amazing Doctor who believed us, and from point of this referral in January 2022, it took therefore just 14 months to receive the official diagnosis that no, we were not imagining this and that yes LM was indeed an autistic child. The pediatrician gave her opinion at our first meeting with her in May 2022 that this was indeed her opinion, but there was a process to follow.
Our process in a North London Borough was to be assessed by the “Pathway to Autism” team, led by Speech and Language therapists. LM was already having SLT input by the point of his official diagnosis. The official diagnosis has pinged off more referrals, to a sleep specialist Health Visitor, to an introduction to services in the borough, and I’m signed up for online classes on symbols and sensory advice to support LM with his day to day functioning.
I think we have come a long way in the UK, but still much is unknown by most of us (me included, pre having LM) about autism. There is still the general feeling that it is probably just neurotic parents, pushing for “labels” as everyones a bit OTT about diagnoses these day aren’t they?! There’s also a feeling that unless your child presents as a profoundly autistic child, it can’t be that bad for you. Hidden disabilities, and explaining it, (and true for any disability not just autism), is a real struggle. Particularly because a lot of what you discuss around autism, has some relatability to some elements of standard child development. It is explaining that this is NOT the same as standard child development issues however, that what we are explaining can be understood as a disability. The biggest challenge I have explaining to people are the challenges LM experiences under aspects such as executive functioning. This includes elements such as waiting, attention and focus, understanding situational context (why are we in a queue, sat on a mat for story time, in a theatre?), awareness of danger, and much more. Then, speech and language. As LM has sung from an early age (a form of stimming- he sang all day long, not word perfect of course but you always got it)- despite the fact until very recently he only had a few core words he could use, the implicature is always “but he can talk”. It wouldn’t take much to scratch the surface to realise some of the challenges LM has faced and faces with his language, although at nearly 3 now, he’s also doing so well. Questions, things that others may take for granted, are the most obvious area of difference for LM. Anything that is not highly concrete and functional, will not get an answer. “How was your day”, “What do you want to do today” “Are you hungry?” are out. We simplify our language and we simply, get more concrete about it! Instead of “Are you hungry?”, I’d ask and show him a visual at the same time something such as “do you want toast, or a biscuit?”. LM cannot consistently tell us when he is in pain. He will not always understand verbal directions, “in the bathroom”, “under the box”. He’s flourishing with his speech and communication in general, but this has an impact.
In the UK, we do not give classifications with autism. LM’s needs were described as significant in his report, but also that he has great skills and areas for growth.
How does all of this affect us getting out in London then, you ask? It has been a struggle, until the last couple of months. Conversely, where people discuss the “terrible 2s”, things have got easier for us to manage in regards to LM’s anxieties and understanding his support needs better as he has gotten older. For us, the “typically” mentioned issues of many autistic kids, such as crowds, noise and lights are actually ok for LM. This isn’t surprising, all autistic kids are so different as all kids, it isn’t a monolith. His main struggles, and therefore our main struggles out and about as his parents, will be sensory but related more to the confinement and straps in the pram, the generalised anxiety this causes (increase crying), attention and focus, elopement and lack of awareness re danger. Meeting people we don’t know can cause anxiety and a lot of crying. His receptive language is still developing, so understanding our words and instructions is still coming and this is an issue with other children at times. He’s highly tactile, but still does not like people he does not know to touch him. Naps used to be a terrible issue, as he could not fall asleep in the pram, so high were his vestibular needs and needing to be rocked at all times. Meltdowns secondary to rigid behaviours were and still can be common, especially around taking to and collecting from nursery. People look and think it’s a naughty child. They don’t realise I’ve forgotten to wear the same colour shoes I dropped him off in, and how this impacts the certainty he needs in his world.
There is SO much now that we DO do! LM is a huge fan of softplay, city farms, and we have some trampoline sessions coming up which I know he will love. i have taken him to art galleries with me from a baby, and mostly he likes these to run around in of course! The areas in which I’m not wholly confident in taking him, based on his needs at the moment, are toddler theatres, art play/creative play sessions, and restaurants. That doesn’t mean we will never do these things of course: I’m always and also really keen to do them as much as we can, in a contained way, so that LM gets the exposure he needs too, and that’s so important for him. Until this point, LM has been reliant on using my phone to stay in the pram. If doors have been open, he’s escaped the session to run out. With certain things (such as toddler theatre) we will look for relaxed performances where they are possible. We have just come back from Poland (blog coming up!) and LM smashed it. Gdansk was the perfect place for him, and has give me the confidence to believe I can travel solo with him.
In order to feel more comfortable discussing the diagnosis, but also having LM in general on my blog especially as he ages, I have done a couple of things this year. One is to take LMs name off of my website and Instagram. The second is to now only take photos of the back of his head. Until he is older enough to give his consent, not just regarding any discussion of him as an autistic child but simply because he is not able to give consent to be part of this blog, in the way he was previously. (This is also due to the dark web, which makes me shudder).
Going forward, the guides I plan to produce that discuss “autism friendly or accessible” places in London, may not be applicable of course for the entire spectrum. I think that goes without saying. So if you read these guides, and feel that they do not apply to you and your autistic child, I understand, empathise that will be frustrating for you, and apologise for that. I can only work with what we are experiencing, and offer some suggestions around it. The spectrum is so wide, it is impossible to say with full certainty that what works and is good for my child will work for yours.
We are excited to get started, with this new perspective!
Do you have an autistic child in London? How do you find the SEN events for them?
Love this post! Thanks for posting it! I love the thoughtfulness you’ve put into it. I must say, I almost choked when I read someone was ignorant enough to tell you “he looks okay so he must be”. The ignorance in that statement is astounding!! I’m sorry you had to go through that nonsense! Especially as it sounds like it came from someone(s) who should’ve known better!
Ahhh thank you Kim, I so appreciate it! Most people really have been really, really lovely…but I’ve been astounded by the amount of challenges we have had to what we were experiencing and what we knew as his parents. The official confirmation has done away with that nonsense indeed, it’s just a shame you’re disbelieved so much before it. I can understand someone not fully understanding to begin with, but to outwardly challenge or disagree with the parent confiding in you is just bonkers isn’t it! xx