Wednesday, 6 April 2016

The ‘A’ Word is more of a ‘B’ Word

Having sat through three episodes of the ‘A’word  it’s time for a reality check of what life is really like for families coping with Autism. 

The A Word
Scene from the 'A' Word showing central Character Joe who has Autism.

 My emotions were already running hot after Episode 2 of the new BBC drama ‘The A Word’ but episode 3 put me on the boiling point. I was going to keep my comments until the end of the series but I can’t keep silent any longer. This drama promised so much and to quote its writer Peter Bowker ‘We have the opportunity here to make something funny, tough, realistic and inventive about contemporary family life and autism’. It is just a shame that the BBC, Tiger Aspect Productions and Peter Bowker forgot the reality of being a family with a child with Autism in 21st Century Conservative Britain; where our government has stripped us of all the services we need to support our children.

The ‘A’ Word lulls us in to a false environment with its northern accents and plain speaking Maurice Scott, played by Christopher Eccleston. Put a bunch of Northern Accents on the TV these days and some how we are to believe they are ‘one of us’. But actually so far in the series I have seen the family pay for the services of every specialist intervention they have had in Joe’s care. Last night we laughed at the television when Joe’s mum Alison paid for a private Speech and Language Specialist to work with Joe. Seeing the results from the therapists work she turns to her husband and says ‘Lets get her to work with him three times a week’. We tried not to choke on our late night meal, as we sat and did the maths. Even two years ago when I enquired about private speech and language therapy it was £90.00 for the first assessment, which was an hour and then £60.00 per session there after. The therapist in Episode 3’s session seemed to be there for some time across an afternoon. Time on the NHS is definitely not endless and most of us are in the locally government funded system where our kids get seen once a month if we are lucky.

In last weeks episode the parents pulled in favours to get expert advise. I am not sure most families with disabled children can do that, but how I wish we could. When my son was three we paid £250.00 for 30 minutes with a Neurologist. For a family that now only has one income coming in, that is a lot of money to pay out. Thankfully the consultant referred us to his NHS clinic, but of course due to the continual cutbacks to NHS services my son gets to be seen once a year. Once a year is simply not enough when a quarter of your child’s brain is damaged and they are still developing their neurological pathways.

Then there is the subject of education. Where does Joe fit in? In episode 2 his Dad went to look at a Special Education School and he seemed to come away quite positive and supportive of the idea that it might be the best place for Joe. Alison, Joe’s mother was completely against the idea. Special Education was a dirty word it seemed. I felt my heart sink, because I have two children at a local government funded Special School and believe me it is not a last resort. I was hoping the thread of this would be picked up again, but having read the overview of the second series of the ‘A’ word being shown on Israeli Television it looks as though the character of Joe will stay in mainstream supported by a private tutor.  Will the British version change this storyline to present a more realistic option? I hope so. This is the great danger of taking a successful series from another country and reworking it to suit a British audience with a social and education structure that is very different.

I knew very early on that my twins would not cope with mainstream school, it was heart breaking, but I knew I had to get over my pain very quickly and make the best choices possible for my children. We were able to get a referral to a special education nursery via our health visitor when the children were three. Twice yearly a panel meet at the local education authority to offer a small number of places. We were lucky that our children were in the system very early on, but future generations will not be so lucky as the government continues to cut funding to Special Education nurseries. There is the belief that these children can cope in a privately funded nursery with kids who are without needs. But having been there and bought the T-Shirt I can say that this is not the case. Children with Special Educational needs are not supported properly at your average nursery. To quote one nursery manager ‘Your son is a danger to the other children’. My son was three years old and his behaviour was down to inadequate support, love and care at a nursery school that did not understand or have the time to care for extra needs.

Places are limited at SEN schools and so those children on the Autistic Spectrum that can cope in mainstream with support often stay in an under funded SEN unit at a mainstream school. My son is bright, people say that annoying thing of ‘You wouldn’t know there was anything wrong. He looks so normal’. But he can’t cope with large groups of people, too much noise, too much light and too much sound and he crashes to the floor. How then would he ever cope in a mainstream class of 30 students? At his school he is in a class of 11 students, supported by 1 teacher and 3 teaching assistants.

So far in the ‘A’ word I haven’t seen any local education authority input, did I fall asleep at some point and miss it? It is highly likely because unlike the character of ‘Joe’ my disabled children wake frequently during the night so I am permanently exhausted unlike Joe’s mother. I also smiled when she rushes off to Manchester leaving Joe with a baby sitter. I have never had a baby sitter, it is not an option as most people cannot cope with any child on the Autistic Spectrum. I have to employ the services of a special carer, which costs up to £15.00 per child, per hour. With one income in the house this is not possible. Our only local authority funded respite was taken away two years ago and I have had to fight since then to get any reinstated. When Respite does finally arrive I will receive just four hours a month. Joe’s mum Alison seems to dash off to whereever she likes, and dumps her kid with anyone who will have him. Most children on the Autistic Spectrum need a rigid routine and going anywhere requires detailed advanced planning. I also note she is able to run her own business so I am starting to think she is some kind of super woman. She is certainly not like any real mum of an Autistic Child. Most of us are running on empty and barely able to hold down a part-time job, in fact only 16% of mothers of disabled children are able to work compared to 61% of other mothers. I once ran my own business, I employed people, I made my clients happy, and then I had twins, born with disabilities. There was no choice but to close my business, and I lost everything. So show me the real life of a family living with Autism.

Show me the family where the grandparents are so elderly and infirm they can barely take care of themselves let alone help care for your child. Show me the family where the child screams the house down because you gave him the wrong spoon with breakfast. Show me the family where your child is screaming for 20-minutes in a busy public park while other children play and parents stare at you as if your child is being naughty or out of control. The reality is that your brain damaged child that looks so ‘normal’ cannot process the fact that you have ran out of money and can’t pay for them to go on a train ride.  

Show me the mother collapsed on the floor because after five years of no sleep, and fighting for every scrap of help from the local authority she wonders how she will get through the day. Show me the parents who go to bed every night exhaustion, who have forgotten that they were ever young and carefree. So far in the ‘A’ word all the grown-ups seem to resolve their problems by having sex. Most parents of Autistic children just want to go to bed to sleep and some don’t sleep in the same bed because 31% of couples with disabled children have relationship problems.

The ‘A’ word is a ‘B’ word. Bullshit. Made for a middle class audience who will get some sense of Autism, but in the end they will still stand and stare at me and my family the next time my son has a meltdown in public. After the last three episodes they will form the belief that access to support is of an abundant nature, and it probably is if you have the money to pay for it. Over 52% of families with disabled children are at risk of poverty, but I am in no doubt that the BBC and Tiger Aspect will not show anything that is based on reality. Hailed as a drama that will show the reality of family life and Autism, I think it is time to burst that bubble.

If you are caring for a disabled child or adult you can find support through Carers UK :

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