I read so many posts by mothers of autistic children describing the moment they were told their child had autism and the resultant paradigm shift this caused. Some are shocked, many need to come to terms with what this means, and many feel vindicated. The wealth of such narratives makes me feel somewhat isolated. Our experience was so different that I wonder if there is some fault within me.
Minkey was born to me as a single mother. I was 21 years old and already had a 10 month old baby. My husband had left me for another woman when I was 6 months pregnant with him, never really forgiving me for not having the abortion I was encouraged to have, but which he agreed with me refusing. I had already experienced 3 miscarriages by this point and having lost children I couldn’t face doing it to myself. It was a time of great instability for me which I wouldn’t have survived had it not been for the support of my mother and sister. Being a 21 year old, disabled, single mother of two had never been my plan for my life and I felt adrift.
By the time he was born I was still living with Post Natal Depression after the birth of my first child lead to a month in the neo-natal intensive care unit. The sense of distance had a negative impact upon our bond. I had spent the whole of my pregnancy petrified that the PND would continue with the birth of my second child. Thankfully, the moment he was born a surge of love overcame me and the desire to protect this child as both his mother and his father was firmly in place. Perhaps this is why, when he failed to make eye contact with me, or cried when being held up, or cried when being laid down, I didn’t experience any feelings of pain or panic. I was so overwhelmed by the feelings of love which had been numbed before that my brain more than compensated for what he was unable to express.
The development of his speech was slow, and when it did happen he counted to ten right away. After that came a flow of words which would challenge the most verbose adults. He didn’t like to cuddle or kiss me, and rarely came to me to seek my approval in the way his brother did, but I simply reasoned that it was just his way. I had been an elective mute myself until the age of 10 when social skills classes helped to break down that wall, but despite this I had continued to struggle with social interaction my entire life. I find conversational cues very difficult and have always preferred my own company. As a small child I had few friends and I was seen as my peers as odd as I tended to keep my nose in a book rather than involved in the games of other children, which I could never figure out how to take part in. His behaviours made sense to me. The sociable way of his brother wasn’t for everyone and that was fine. It simply meant that when he did do something for the first time it was all the more special and celebrated.
Nonetheless I did realise that he may need additional support and by the age of 18 months he was seeing professionals about his additional needs. Semantic pragmatic language disorder and Asperger’s were touted from an early age. By the time he was 6 the friendships he had made had begun to break down as the sociable development of his peers started to quickly outmanoeuvre his. He was placed on a waiting list with CAMHS who told us, at his options meeting, that they thought he was probably autistic. I think we were already quite sure anyway, and this suggestion simply put a more definite name to the way he is. We were on the waiting list for years before he finally underwent the assessment process and he received his final diagnosis this year. We were surprised when he was diagnosed as Autistic and with ADHD as people had always mentioned his inattention, for which he had even been tested for epilepsy, but no one had ever touted ADHD as a possibility before. However, even then it didn’t feel like anything particularly important. It was yet another name to describe how he was but that was all. Minkey is Minkey, not autism, not ADHD, he’s my son and he’s pretty amazing. A rose by any other name certainly does smell as sweet.