Supporting an alternative view of the world. At the start of my journey into understanding autism…

I read The Siege by Clara Claiborne Park, the revised (1982) copy. It was intriguing from the outset, with the first chapter titled The Changeling, describing her daughter’s beauty, indifference and ‘abandonment’ of the world around her, as she stopped using skills previously shown. Although it was early in my understanding of autism (mid-90’s), I had read about the Irish myth of fairies who stole children away, leaving a fairy child behind, elfin-like and apparently absent from the world around them. Of course I did not believe the myth, but the metaphor and recount by Park resonated in almost every way with my own child. They had an almost ethereal presence; a delicate beauty, agility and intelligence, often appearing out of touch with the world and people around them. An invisible bubble surrounding them, which had both protective and dangerous qualities, with a vulnerability to the world and people around them. As I explained in a previous piece, my child would have been content with those around them, had they provided for their needs.

The otherworldliness of my eldest autistic child was to remain for some time, gradually responding to the world through their interests and sensory experiences. At 18 months old my child did not appear to understand, or seek to communicate with, the world around them. Their language had gone from being a few words to nothing, with responses to direct approaches ignored, rebuffed with noises, or through physical responses. There was no shared language, such as pointing or eye contact, with needs supported through observation, prediction and a familiar environment; building a picture of what their preferences and needs were, to ensure that they thrived. It was not easy in a time where there was less understanding of autism, the differences in communication, sensory processing and particularly how best to support an autistic child.

On top of ensuring my child’s happiness, making a meaningful connection with them was my top priority. I will bring Lovaas in briefly at this point, because of its relevance at this time in my life, although I don’t want to be dragged down in negativity, or provide a platform for his approach. When my child was about two and a half, there was a new, highly praised ‘treatment’ for autistic children, which was purported to ‘cure’ them and develop effective communication. I recall attending an autism parent meeting, where some parents were talking about the miraculous effect of the Lovaas Approach (Applied Behaviour Analysis (ABA)). To me, it was not only something that sounded extremely negative, with children appearing unhappy and being ‘made’ to do, or not do, tasks and activities, very much like ‘animal training’, but these parents had sold their house and moved to Norway to ensure their child was treated by a trained therapist. I knew that early support could help my child, however, this was something I was not prepared to consider and it made me more determined to support and connect with my child in a way meaningful to them.

In response to those wondering whether the aforementioned child’s trajectory was changed for the better through their therapy, that would be for their family to say. Although I continue to be very happy with the decisions I made. It is important to remember that when looking at your child, listening to alternative views and trying different ideas, it can be easy to claim things do or don’t work, because of the changes made; however, it is rarely possible to know for sure. I will talk about this subject another time; having tried (and stopped) some interventions, such as a gluten-free diet when my child was diagnosed with a ‘leaky-gut’ (through sending a urine sample off in the post!), as well as explaining my misplaced fear of the MMR vaccine. Certainly predictability, flexibility (of adults), the use of interests and a child-centred approach, are all ones that can help, especially the latter, as all children are different and dynamic human beings.

At this time (1995) when I was exploring autism and trying to understand my child’s view of the world, it became apparent that words were not their preferred way to communicate, and English was certainly not their first language. Music and singing songs provided times of connection and reciprocal responses, often relating to interests, Postman Pat, Rosie and Jim, Tots TV, Brum (thank you Anne Wood for everything Ragdoll!) or Thomas the Tank Engine. Snippets of language, mostly echolalic (repeated verbatim) words and phrases began, which became increasingly meaningful. It did not feel like the words were being used or understood, as in a conventional language, with each word having a distinct meaning, but it was a sung language where groups of sounds were used, such as “taamow” (come on), “fonomee” (follow me).

Although the beginning of some sung echolalic words and phrases appeared, it also helped me at this time to think of their being a delay developmentally, with professionals explaining it through months in terms of age, enabling me to understand my child’s communication and behaviour. I know some autistic individuals talk about having understood at an early age the words or language used around them (some going on to become incredible linguists), but this was not the case for my child (who as an adult can discuss this with me now). Communication was through expressing a need using behaviour, or, after a while, by leading me and giving me an object, such as an empty bottle (they had bottles of milk until three and a half years old when it became apparent it had rotted their teeth!). Before a time when I understood ‘objects of reference’, I tried my hardest and put photographs on doors to encourage communication and pointing.

At the same time, I had some happy coincidences I wish all parents could have available to them. My child began a special school nursery, which was inclusive of local ‘mainstream’ children, where there was a positive and real-life environment, with experienced and trained staff. At this school, Makaton signing was used and I met a wonderful speech therapist, who is now a very good friend. I was facilitated to learn Makaton signing myself, as well as receiving Hanen training and Portage, from another highly experienced speech therapist. Although my child did not communicate themselves through Makaton, other than when participating in songs, it did provide a springboard and enabled them to understand my gestures when I communicated key information, such as ‘finished’ and ‘more’. The Hanen and Portage training supported me to see how I needed to work in parallel and mirror my child, connecting through their interests, rather than my own.

I had not heard of sensory processing, or begun reading about the topic, which I did later through books by people, such as Rita Jordan and Olga Bogdashina. However, communicating through sensory experiences was an integral part of making connections with my child. Music and sound was my child’s first language, with sound and body movement expressing and connecting with the world around them. Alongside sound and music, bath time was an amazing opportunity for making connections. Water play was much loved and taking a tricoloured torch into the bathroom became a favourite game, turning the light off, prompting with “ready, steady…” to encourage communication to change the colour, sending the light darting around the room. “Go…” become a key way of requesting this activity. Visual stimulation would also provide pleasure, as my child stood close to the TV as the credits flew past, viewed a wheel turning, or considered their formation of Playmobil characters, all using peripheral vision from the corner of their eyes.

Other sensory experiences were communicated as being negative, with certain fabrics causing clothes to be removed and a preference for particular fabrics expressed through wanting to wear the same items. Whilst food caused difficulties, with an aversion to particular brands and through consumption of inedible substances (pica), such as sand or uncooked pasta. Some sounds caused an extreme phobia that continues to this day: Having fed a peacock in the grounds of a garden, a pheasant flew over my child’s head making the familiar, “cuck..uck..uck” sound. From that moment on a fear of peacocks, pheasants and cockerels prevailed. At its most extreme, this meant they could only go out of a house with their hands over their ears, when there were chickens nearby and visits to animal parks was extremely challenging. This was before people used ear-defenders, as they do today.

It is interesting to end on a note about both my autistic children’s ability to communicate when they were older. As we were lucky enough to go on foreign holidays, I noticed that not only were the children friendly, the language and cultural ‘barriers’ provided a leveller, supporting a very inclusive environment. Families and children did not appear to judge my children’s slightly different or ‘quirky’ language and behaviour. With my autistic children making friends with children on an equal footing, where differences in language complexity, structure and tone were not picked out as being ‘wrong’ or ‘different’. Both my autistic children have developed effective ways to communicate, forming friendships and loving relationships, but it was not always the case and does not mean they necessarily fit into a mainstream or ‘typical’ way of being or communicating.

Trying to connect with your child and trusting your own instinct, as to what is right or wrong, is important. Remembering that being alternative or ‘different’ is not a wrong, or disordered, view of the world.

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