One of the first questions people ask when I tell them my son is on the autistic spectrum is, ‘how did you know?’.
The honest answer is that I didn’t. The mothers intuition that we are all supposed to have just didn’t kick in and I simply assumed that he was taking a bit longer to achieve his developmental milestones than his peers.
It took me quite a long time to adjust to motherhood, and I would often feel that I wasn’t very good at it. I found it really hard to play with my son – I am not a crafty/artsy mum and my imagination when it comes to games for toddlers is pretty minimal.
At the time, I put this down to a lack of natural mothering skills, but, with hindsight, I now know that he was more challenging to engage with than most children of his age, and that, not my inability, was the greater issue.
I do remember on several occasions being out with mum friends feeling a piercing sense of worry/sadness on hearing their conversations with their toddlers, enjoying their child waving, or pointing to something, starting to walk. All these things took a lot longer for us, but while sometimes I did feel uncomfortable that I had no notes to compare, I didn’t see it as anything to worry about.
It was in fact, other people who thought I should worry. Our childminder expressed some concerns about his lack of speech, and my sister pressed me to see the GP to talk about my son’s late walking – he used to walk on his knees, which while quite funny, did also attract a lot of staring – him ‘walking’ to the airport gate is a particular memory. Looking back, this is really where our journey into a whole new world began.
The GP informed us that our son ‘should’ have been walking by 18 months (I hate NHS guidelines) – so we were well overdue on that front, with him finally ditching the knee walk on the day of his second birthday. She also asked about his language skills, which, at around 20 months were still pretty minimal. I left with a referral to a physio, but still feeling pretty relaxed about his delays. I still didn’t ‘know’’.
During one of his physio appointments, we were asked again about his language, which, was still quite basic. A referral for speech and language therapy followed. It was about this time that I started taking our son to speech and language drop ins and some comments were made about his eye contact, social skills, and overall awareness of his environment. I think this would have been the first time I heard that he might get a referral to the Autism Related Disorder Unit, which sounded utterly terrifying to me, like some sort of scary institution, with doctors in white coats. This all seemed a whole different ball game – one I really, really didn’t want to play.
This all coincided with our temporary childminder making some rather unwelcome comments about our son. She told us he wouldn’t say hello or goodbye to people, didn’t make enough eye contact and, generally was not where he ‘should’ be. She told me to look up autism on the NHS website and said, ‘Well they do say children with long eyelashes…’ as if the length of my son’s eyelashes were an indication that he was on the spectrum!
Perhaps it was at this point that it started to dawn on me that maybe everyone else was right, and so began months of agonising worry and googling around what may or may not be going on with our son. Imagining all sorts of scary scenarios and driving myself slightly mad with worry about his future.
At his third year paediatric review, the paediatrician immediately put us at ease by telling us; ‘ I’ve got autistic traits, lots of people have’ . Our minds were put at rest a little when she said that, while our son did show some traits, there were not enough to warrant a diagnosis. This felt right to me. We left and for a few blissful months stopped worrying – too much.
Things really started to happen when we went back for his fourth year paediatric review. I walked in, confident that any concerns would again be dismissed as not being enough to warrant any further action. His pre-school had prepared a gently worded report on him, and that, combined with the paediatricians observations, and what we told her, brought her to the conclusion that, while she was still a little on the fence, there were now enough concerns to put him forward for a diagnosis. This was the moment things got real. It was probably the biggest blow I have had yet in this whole process. I just couldn’t believe that my son, my gorgeous, maybe slightly quirky son, could actually be on the autistic spectrum. How could it not have been more obvious? What kind of future lay ahead? I felt numb yet tearful and frightened. The one thing that gave me some kind of comfort was when the paediatrician (using a stock line I think) told us that this was still the same boy we had walked in with. Nothing had changed. But it had, even though he hadn’t.
And so more difficult months of worrying and predicting all sorts of different looking futures. Trying so hard not to think about worst case scenarios but generally failing. Bit by bit my mindset was starting to change and, during the 5 month wait before our assessment, I had come to a sort of acceptance that our son could be diagnosed as high functioning autistic.
The assessment itself was ok. A paediatrician asked us a lot of questions, while a speech and language therapist observed our son. It was a strange and uncomfortable feeling, wanting to advocate for him, while also trying to be honest with my answers. Being asked to give examples of your child’s ‘weaknesses’ when you really want to show all the positives too is a serious conflict of interest for any parent. However there were some moments of clarity which have since helped me understand my son better – in particular when the paediatrician told us our son sounded very ‘self directed’ – a phrase I hadn’t heard before, but which perfectly captured my son’s personality. It also made me feel better about my lack of success engaging him in anything whatsoever that he wasn’t interested in.
After a short discussion outside, the paediatrician and speech and language therapist came back and asked us what we thought. Here follows the second biggest blow. My husband and I both mumbled something about our son being different, and that something was ‘going on’ to which the paediatrician said, quite abruptly, as if it was blatantly obvious – ‘He’s autistic’. I found the delivery of this news very disconcerting – was he saying that it had been obvious since the moment we walked in the room? That, why had no-one seen it sooner? I just wish that we could have been told in a slightly more gentle way. Especially as to me, it certainly wasn’t blindingly obvious.
Other than that though he did give us some grounds for hope, saying that, with the right support, our son could grow up to be a well functioning adult, and that children would ‘love him’ at school – surely one of the worst fears of every parent with an autistic child is bullying.
And so with that, we were dismissed with some badly photocopied fact sheets and a smile.
I think it was around this time that I decided that I’d had enough of everyone focusing on our son’s weaknesses. We had the diagnosis, the worrying of ‘what ifs’ was over. Now we had to focus on finding better ways of dealing with our son’s autism, and ultimately, of understanding him better.
We are now nearly 18 months post diagnosis and the pre assessment phase really feels like part one of our journey. My frantic googling has calmed down, and I am trying – sometimes failing- to take one day (or month) at a time. When I do start thinking too much about the future I have learnt that I can go into quite a dark, anxious place, so when possible I try and not to let my mind go there. Not always easy, and I don’t always succeed, but it is a good life lesson and definitely helps.
By far the best thing I have done post diagnosis is hear other parents experiences of having children on the spectrum. It took me a while to feel ready to do this and I wasn’t sure where we would ‘fit’ in terms of peoples challenges. However, going to workshops and listening to ideas, advice and other stories has been me feel far less alone.
For now, we are working closely with the school, our amazing outreach worker and each other, to try and make life for everyone as smooth as possible. Who knows what lies ahead but what I do know is that we are incredibly lucky to have such a gorgeous little boy and to have a strong team of caring, dedicated and supportive professionals around us. I do worry about the future but have to try and focus on now, and giving our son the tools to be the best he can possibly be.
– This article originally appeared on Autism Teaching Tool