What an autism diagnosis means for us
author By Emilie Leeks,

We always knew our oldest child was a bit different. Even when he was an only child, and we had precious little in the way of comparative material, we nevertheless had constant niggling thoughts about the overall picture of his development. There were no great concerns - certainly nothing we could really put our finger on - but something just kept nagging away at us; that he wasn't quite like other children his age.

The nursery we put our son into part time at 12 months of age was very supportive. Whilst the staff could also sense a little something different about him, it was nothing tangible or quantifiable. It wasn't even something that was significantly (if at all) impacting his daily life at the nursery. We kept tabs on things with them, but with their support, and incidental, almost imperceptible, environmental adaptations, he did just fine there.

When we had our second child (#1 was just over two and a half years old when she was born), we started to understand better how it could be; she was a textbook developer, following all the expected milestones pretty much to the letter. But it was more than that. They both laughed their first laugh at around the expected age, but from very early on, our daughter would laugh at family jokes even when she couldn't possibly have any idea what we were laughing about, just because everyone else was laughing. They both recognised and understood what tears might mean, but she would acknowledge sad feelings in others. They both had their fair share of meltdowns, but only she would have broken cookie moments* - you know the ones where nothing you do is right??! - which we thought were very odd, as we had never had to deal with those issues before! She and our firstborn were just very different. Not better, not worse - not even really easier or more difficult - just different.

When we tried to express our vague concerns to those around us, people were very kind, and supported us in the best way they could. We had lots of reassuring comments from many wonderfully well meaning people; 'All children do that' 'Some children are just shy' 'That's just boys for you' are a few that spring to mind. And there was a weird sort of dichotomy about being told not to worry about it - we desperately wanted to cling onto the 'all children do that' idea, but because we knew deep down that that was not in fact the case, it was strangely frustrating to hear it - as if it belittled all our concerns and ideas about who our son was. We neither wanted to hear 'it's all fine', nor not hear it! It's a strange place to be stuck in. Then having our third child (a son) when #1 was about four and a half, we knew that the 'it's just boys' argument didn't wash - he and our #2 (a daughter) were far more similar than the two boys were to each other.

Following on rapidly (it felt!) from the birth of #3, on the morning of #1's 5th birthday, he started school. School, with all its expectations and shoulds and conformity. School did not go well for our son. Although the words and actions of the staff expressed concern about our son's progress - indeed, we heard more than once that 'he needs to be more like the other children' - they also implied that we were over-anxious and interfering and really what were we worried about after all? If we just left him to them and got out of their way of doing things, they would soon mould him into shape. But we knew. We knew that no matter what we, or they, or anyone else did, our son was never going to be more like the other children. And you know what? We didn't want him to be - we just wanted him to be free to be himself.

After numerous, and increasingly frustrating, meetings with the school, we kickstarted the diagnosis process for possible autism spectrum conditions** (ASC). And then the waiting began. It wasn't all passive - we spent a lot (a lot!!) of time gathering information: researching, reading, discussing, seeing other professionals (occupational therapy and speech and language therapy were good places to start)… But there was a lot of just waiting, and that was really really really hard; in fact, we didn't know how hard it was until the wait finally came to an end, nearly 2 years after the original referral. And in amongst all of the waiting, and the researching, we were contending with a toddler, a new baby, and probably the worst time of my life dealing with the school. In the end, we moved #1 to a new school, which he started in the September of year 1. We were very open with them about our concerns and our past experiences with school, and the new school could not have been more supportive. Although we had a lot of mistrust to shed, we had found somewhere that wanted to listen, and that respected our position and views. And not only that, accepted - no, celebrated - our son for the individual that he was.

As we approached our son's appointment, we had very mixed feelings about what the outcome would be, and how that would feel for us. I was so desperately nervous about the appointment; did I want them to say 'no, he's just like everyone else' (but then what was it I was sensing about him that was different?), or did I want the alternative, which was to have my son diagnosed with something that is not what you dream of for your children. I spent a lot of time talking it over in my Listening Partnerships; through this vital support, I was able to work through some of the fear and anxiousness I felt, and to move on to getting some clarity about what I hoped to get out of the appointment, and how things would be depending on the various possible outcomes.

Then the day arrived. It was like doing an exam that you can't really prepare for - and then what anyway? Suddenly my whole life, which was based around uncertainty, and 'he might have autism' thoughts, was all going to change, was it? Until that time, #1 was Schrodinger's child - simultaneously both on the autism spectrum, and not on it. But now we would have to open the box. I couldn't even conceive of not not knowing. So they saw him; they saw us. Then they had to discuss with each other before feeding back - the wait was interminable; I think it was 20 minutes in reality. I have literally never been so nervous in my life. When we finally went back to meet with these two professionals who were about to maybe, possibly, probably change our lives forever, they broke it to us straightaway, with no edging around it, and for that I am thankful: they believed from the evidence available to them, from meeting our son, that he had Asperger's syndrome - a condition on the autism spectrum.

And then? Relief. Laughter. Ebbing tension. Does that sound weird? But the alternative was 'it's all in your mind'. It all just felt strange - yesterday, he was just our #1, and now suddenly I have a child with autism? Really? My child?! Grief would come later - but nothing like as much or as fiercely as I thought it would. I remember asking my mum once upon a time, as a teenager, how she would feel if I turned out to be gay (I think I was just teenagerly checking that she was indeed as unbigoted as I thought!), and you know what she said? She said 'I would be sad for you [wait for it!!] because your life would be much harder'. And that has been the extent of my grief - his life will indeed be harder. How will he manage in a world set up for neurotypicals***? How will we manage with the extra input he might need? How hard will it be to watch him try to manage being different in our judgemental, uncompassionate, intolerant society which so highly values sameness?

So how did we not figure it out sooner? As a paediatric speech and language therapist, I do have a feeling that I should have known - that I should have got things moving on it sooner. But I did know. We did know. In fact, we always always said, literally from when he was a babe in arms, that he was 'a bit autistic'. It just didn't ever really have an impact in those early years, at home or at nursery. It brings home to me just how important the environment is - that if we are accepting and tolerant of difference, if we can adjust and accommodate people's individuality that little bit more, many issues which seem to be a problem can actually be put down to an inhospitable environment. After all, "When a flower doesn't bloom you fix the environment in which it grows, not the flower." (Alexander Den Heijer)


Looking back now, we had in fact adapted more than we realised at home, as had the nursery; this is as it should be of course - nobody had tried to change our son, but we had tried to make the world around him fit him better. Even now I find it hard to put my finger on what is different for our #1. It's subtle. It's circumstantial - sometimes we say lightheartedly 'he's not autistic at home!'. But things like emotional regulation, higher level social skills, and flexibility do not come easily to him. He can get anxious, and tends towards familiarity and sameness. He gets completely, wonderfully lost in a topic, activity or book - he has such focus and interest, and asks the most insightful questions. As with any person you'll ever meet, some aspects of his way of being are inarguably positive; others pose us more challenges. But he is who he is, and we wouldn't change him for the world. I will never forget one parent I met in my speech and language therapy clinic, who brought her son to see me - he was also on the spectrum, and if memory serves me correctly, he must have been around the same age that our #1 is now. During the course of our discussions, she said that she had been asked a number of times whether she would want to 'get rid of' or 'cure' the autism if she could. And you know what she said? She said 'the answer is no - because without his autism, he wouldn't be him'. And that's the crux of it - like this understated but inspirational mother, we too love our son unconditionally, just the way he is.

Additional notes:

What we hope for our son now, and for ourselves as a family, is that public awareness of ASCs increases, and with that, acceptance of this neurological difference and the impact it has becomes far more prevalent than is currently the case; awareness on its own is not enough. We have found the diagnosis a useful one for our family, both in that it helps us better understand our son (and gives us a point from which we can leap when we are researching areas which we don't understand so well), and in that it gives a paradigm of a positive identity for our son's differences. But what we hope for most of all is a society where difference is celebrated, and less-than-typical behaviours are, yes, noticed, but not judged - and where a label of autism spectrum condition might be a positive for those on the spectrum, but is not a necessity to have differences recognised and accommodated.

Further reading/resources - there are many amazing resources out there, but these a just a very few of those we have found useful:

*Regarding the 'broken cookie' moments - we now understand a little better that where most children are using a pretext (i.e. it's not really about the broken cookie, wrong colour cup, toast cut in wrong shape…) to allow themselves to offload some big emotions through a meltdown, when our son gets upset about something, generally he really is upset (or in his case, overwhelmed) by the issue that presents.

**Although the official term is 'autism spectrum disorders', we prefer to avoid the term 'disorder' - it is neither a positive nor an accurate description for those with neurological differences.

***'Neurotypical' is the term generally used to refer to people who are not on the autism spectrum.

A word or two about Journeys in Parenting; a responsive parenting community

Emilie is a Hand in Hand Parenting instructor, and was a paediatric speech and language therapist in her former life. She provides support and coaching for parents via the Journeys in Parenting community. Emilie lives in Berkshire in the UK with her husband and 3 children.

Journeys in Parenting is a community group for parents, carers and parents-to-be, who want to find out more about parenting in a responsive and peaceful way. The community offers information, advice and emotional support for this hard work we do as parents. The vision of the group is to be a safe space, where parents are supported in guiding their families in ways which: are respectful to children; meet the parents' needs; and lead to a more peaceful planet for all.

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Comment by Orla

A difficult journey, beautifully written xxx