So, its been four years almost to the day since Bens official paper diagnosis and around four and a half years since his "most likely autism but we have to check out these other possibilities" diagnosis. So much has changed, good and bad, hence the name for my blog. Everyones perception of autism is different and every child with autism is different so unless someone has lived in anothers shoes who are they to judge how hard or easy your life is. I have found over the years this is something I need to keep reminding myself and keep reassuring myself that other peoples opinions are not relevant and they do not live here so do not know everything, they know what they choose to listen to and what I choose to tell them.
Ben has gone from being a non verbal child who was very classically autistic. Ben had no language at all, he was violent, severely delayed in all his skills and essentially like a baby in so many ways. Ben had only recently learnt to walk and was still clumsy and struggling with coordination. The diagnosis procedure involves a portage checklist which looks at a childs development against what it should be and Ben was behind in every area but he was my wonderful son, he was difficult to care for and extremely difficult to take out of the house but I knew I could never stop loving him.
Imagine going shopping and seeing a child who is 4, 5 or 6 and they are throwing themselves on the floor screaming, most peoples initital thoughts are that this is a naughty child and a mum who clearly cant control them, I mean what 6 year old lies on the floor screaming over a simple thing, and what kind of mother isnt embarrassed and acts like this is perfectly normal??? The answer, a mother of a child for whom this is normal, a mother who has adjusted to the stares of strangers, you are not the first person to stare and certainly wont be the last. A child in a wheelchair has a visible disability and people see a child like this and you can see in their eyes that they know the parents may have things hard, do people do that with the child who aged 6 and big for their age in aged 8 clothes is rolling around Tesco's screaming, no they think bad parents. Disabilities are not always visible.
Autism is such a spectrum, many see it as a line from severe autism to mild autism. What about children or adults who are severe in some ways and mild in others. I see autism as a double-edged sword, there is good and bad, severe and mild in everyone who is in some way affected by autism spectrum disorder. Ben is like this, the good is he has great language now, it developed late and he still has a lot of the typical autism difficulties with his social skills which mean he is unable to use his language as well as it may be possible if he had the social skills of a neurotypical 6 year old. Ben is academically very bright he takes in information and in many ways is a typical 6 year old in the work he is able to do, however again his social skills, his lack of imagination and his difficulties in thinking things through, in the same way as a neurotypical child, hold him back, a double-edged sword.
There is one other element of Ben which really does affect him and myself as his mum. Ben is very aggressive and violent, it is not through malace, though sometimes it feels as if it is. If my husband Andy ever treated me in the way my son does it would be over, domestic violence is not acceptable and rightly so, but violence from a child who does not understand what they are doing and can not control themself is accepted, we struggle to get any help for Ben for this, it feels like noone understands.
I love Ben so much, that will never change, he can not control his emotions well and does not cope well with change to his routine or with lack of control. Ben finds it hard to accept when things are not the way he expects and he does not know his own strength. Despite being six and a half Ben is tall and strong for his age he is loving and fun when he is happy but at the other side of the double-edged sword he is strong, violent and does a whole host of things that hurt me inside and out. More about that on my next blog as this is getting rather long!!
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