How autism came to be for me

How autism came to be for me

Wow, where do I begin? It's hard for me to even think about this and remember so let's just get it over with, it will be good for me. I will be honest and say that I had no idea what autism was until it came to be in my own son. I recognised the name 'autism' but naively thought it was a Downes Syndrome type disability that was instantly visually recognisable.

I had never met anyone who told me they had autism or Aspergers or even an ASD child, and if they did I was completely unaware, in fact, blinkered. And I am ashamed to admit that badly behaved young children were un-disciplined and/or had lazy mothers in my opinion. It never crossed my mind for even a split second that the reason for the child's behaviour just might be a learning disability. How shocking that seems to me now and how could I have dared to think that way?

Did I think my son might be autistic when he began to show signs of something not being quite right with him around 18 months of age? Not in a million trillion years! I remained in my world of neuro-typical children-dom stressing over why Henry's siblings could not remember to flush a toilet or hang up a towel (that they still don't do argh), and 6/10 for a spelling test being just not good enough.

Along came Henry... who by 18 months was seeming to be a bit 'anti-social' (can't believe I used those words), was increasingly not responding to his name being called and had totally regressed to no language at all. He was making little to no eye contact anymore and seemed fixated on certain parts of toys. He didn't want to engage with anyone and increasingly whenever anyone came near him he would shout and shout for what felt like constantly for about six months.

He is my third child and I was never one for checking milestones and clocking things like fine motor skills in his siblings anyway, so really, he was just a sweet, sweet baby who slept so silently at night (I now know just how awake he must have been), and yes, looking back now, perhaps there were little signs of oddities, it doesn't really matter though, what could we or anyone else have done about it? Autism cannot be cured or even fixed, full stop. 

As the hearing test results, the notable concern of the paediatrician and then speech and language assessment results came to light, it became clear that something really rather serious was up with Henry who was at best, very, very severely developmentally delayed, "across the board" even at two and a half. At no time did anyone mention the word autism and it took me googling the concerns I had summed up to the paediatrician to finally have the word "autism" pop up on the screen like a flashing traffic light. I didn't at the time care about all this labelling a child stuff, and remember feeling desperate for someone professional to just jolly tell me what it was so that I could figure out how to learn about it and deal with it and set my expectations.

What followed from my own discovery was a blur of complete and utter shock and realisation that all of our worlds had just changed forever, and for me personally, as Henry's mother, I felt helpless, petrified, powerless and totally panicked over this little boy who I now had NO idea how to help, understand, fix, parent, cope with.

Needless to say, my parents were flown in from halfway across the world for emotional support although equally as clueless about autism as me and using words like 'retarded' and 'spastic' bless them!  I remember my astonishing husband without whom I would have literally crumbled, telling me that we would do whatever it took to give this boy the best possible support and care and education and that no matter what, we would stay focused on who he was as a little, adorable, quirky, weird, hilarious person and embrace and love and protect him just the same as our other children. What a legend this man is.

Overnight we entered this incredible world of 'special needs'. Henry was signed up to the centre run by the speech and language therapist who assessed him and we realised amazing help was at hand, as were many amazing parents of children with all sorts of difficulties and degrees of autism, although that word was again never mentioned given how young all of our children were at the time. I learned that toddlers can show many of the early signs of autism for short periods of time and then kind of snap out of it/catch up and so, understandably, the professionals don't bandy the word around or jump to any conclusions too soon, usually until they are as old as four or even six.

For me, I just wish I had been told outright and I wish professionals had been less PC and more honest even after we knew Henry had autism because I took their politeness and caution to mean his autism was mild and that the language would come and that even though he would always be delayed he would get there, you know? The reality is that for the past few years I have had to go through waves of such intense anxiety and stress working it out for myself and saying what nobody else would, and that is that Henry's autism really is on the plus side of moderate and close to severe in some areas and properly severe in others, and it always, always will be. Hope no-one is choking over the tissues now?

It seems so strange to think of myself as not having ever known about autism when in four short years I have become rather knowledgeable and extremely well versed in the subject! I can't claim to be very academic about it all but, I literally eat, don't sleep, and breathe autism 24/7. And you know what? it's not all that bad, well not as bad as I imagine my friends and family think it is. I have become a better person for it, we have become a better family because of it, and we have all experienced a love for Henry that I believe goes deeper than any other any of us have ever known. It is visible even in his teen and pre-teen siblings nearly every day. He fascinates, astonishes, amuses, humbles, exhausts, entertains us every day. Not that I would rush out and order one or anything, living life with autism is not for the faint-hearted and something you have to learn to do and its so, so hard especially once you step outside your front door.

Henry's siblings have taught me the most valuable coping tool of all, humour. They don't judge him, they don't care where he is developmentally for his age, and they don't have any of the worry or concerns for his education and future that his parents do. To them, he just is who he is, 100% their brother, his own person and pure entertainment most days!

I think people generally know its very hard (usually by the state of the bedraggled sleep deprived and half deranged mothers) but, the assumption is (and I am guessing this is where the pitying looks come in) that these children who have autism are incapable of showing and understanding emotion and love and NOTHING could be further from the truth. It's just not true. It's different that's all. Henry's autism I feel gives him this kind of ethereal beauty and when he looks into your eyes it's as if he can see right into your soul and as though a thousand unspoken words are being conveyed to you. He is so pure and uncomplicated, the more complex elements of socialising being beyond him so, there is no lying or cheating or greed or sarcasm or sulks or whining even (whoop, whoop). 

For me, I knew from the age of four that Henry (at that age pretty much completely non-verbal) was never going to attend a mainstream school, just by virtue of the environment, let alone any possibility of him taking on actual academic learning. I am happy to say that we have been extremely well supported by the powers that be/council in our decision and so Henry has attended specialist schools from the start. I suspect, actually, I don't suspect, I know, the educational journey for those who have high functioning/Aspergers and attend mainstream schools is a way more difficult, frustrating, alienating and exhausting one but, more on this perhaps in another blog.

I will forever be eternally grateful and on my knees with arms waving up and down at their feet in awe of every person who works in the SEN field from TA's to SLT's to OT's to SENCO's and class teachers to kitchen staff and transport staff and carers, they blow me away with their attitudes and commitment and positivity and they never ever judge. I feel truly grateful to be living in the UK benefiting from a 'system' that a) even exists (some countries have none and others are woeful in their attitudes, b) has world leaders in autism research and c) where everyday people are just that much more accepting and educated and aware. And no, no-one has paid me to say this, hah!


3 comments

  • Gogo

    Admirably honest and even more admirable for your acceptance and forming of a delightful family. May you encourage many others.

  • Sam Weerasinghe

    Thanks for sharing your story, so heartfelt & TOTALLY real, you & your family & little H are showing up to this precious life – whatever it throws at us! Awesome. Keep writing the journey for others to relate to & share 💙

  • myf

    This is great to read. Amazed at how brave you are and HONEST. Such cute pictures of Henry as a baby!

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