This is an article I wrote about 2 years ago for another blog that I used to write, not sure if the information is still right or relevant, but I think it still needs to be said.
As you may know, I am the father to a 10-year-old daughter who is Autistic, dyslexic and has ADHD, and I have taken it upon myself to do some research into the cost both financially and emotionally on families in the UK. It will be a biased point of view as some of the contents will be based upon my personal experiences, but I will be using real case studies to back up my claims and hard evidence about the financial costs. My main aim is to highlight the distance families feel from the services that are provided by the NHS and other organisations, where the financial cost come into play and where the money goes. I will compare other medical conditions with Autism with regards to financial cost to see if autism alone is expensive or not. Although the focus of this report is going to be on autism, I will bring other conditions into the contents such as ADHD and dyslexia along with other learning difficulties and some learning disabilities also.
According to The National Autistic Society (2015), 700,000 people in the UK have autism. This figure is inclusive of both children and adults and when compared to the current population of 65.3m (Worldometer.info, 2016) this represents over 1% of the current population. These statistics are made more alarming when you consider that 2.8m people have a relative on the autistic spectrum (The National Autistic Society, 2015). This means that over 4% of the British public are affected by autism in some way. When compared to a more lethal condition such as Coronary Heart Disease or CHD the estimate of people living with autism is a lot less as the British Heart Foundation (2015) states 2.3 million people are living with CHD in the UK. This is over 3 times the number of people who are autistic and the number of total people affected, such as family and relatives will be much higher again. I make this point not to say autism is not as bad as other conditions, on the contrary, although not as lethal as CHD autism affects people just as badly. This comparison is made now to establish hard facts about differing conditions in the UK and their associated estimated costs as we will see further on.
Autism cost the UK at least £32bn a year in terms of treatment, lost earnings, and care and support for children and adults with ASD (BBC, 2015 Daily Mirror, 2015). As a total amount this figure according to Autistica (2015) cost the UK more than heart disease, stroke and cancer combined. I found this staggering and is what prompted me to do this article in the first place amongst other things. Using the earlier example of CHD, the British Heart Foundation (2015) stated healthcare costs relating to CHD are estimated at up to £11 billion each year. This is significantly less than autism as a total and when you break it down further the cost per person per year who are autistic is £45,714 compared to £4782 each for CHD. According to Macmillan (2016), there are now an estimated 2.5 million people living with cancer in the UK, with the annual NHS costs for cancer services at £5 billion, but the cost to society as a whole – including costs for loss of productivity – is £18.3 billion (DirectGov, 2015). This means an average cost of £7320 per person which is a lot less than the average cost for autism. The economic costs of stroke in the UK from a societal perspective total around £9 billion a year (Stroke.org, 2016) which equates to £7500 per person, as there are over 1.2 million stroke survivors in the UK (Stroke.org, 2016). So as can be seen the average cost of autism is higher on individual terms when compared to the other three conditions. However, the overall costs are in contradiction to the earlier statement reported by the BBC and the Daily Mirror which stand at £42 billion as opposed to the reported £32 billion. I will attempt to decipher as to why these figures are wrong and more importantly where is the money going?
I can say hand on heart that my family while getting financial help for my daughter, get nowhere near the amount per person as stated above. One reason why is that the clear majority of the estimated costs were associated with adults, £29bn in the UK, compared to £3.1bn for children (The Guardian, 2014). With adults, 42% was from lost employment and 56% was in services costs (The Guardian, 2014). Although services account for most of the monetary value in childhood, the main cost is for special education (The Guardian, 2014). Up to now, we have not even mentioned any carers that might be involved in helping people with autism, but if you are any good maths, you will see that the remainder is only 2%. These figures show damningly the lack of support carers get, and more importantly the lack of help from carers autistic people get. A whopping £12.1 billion was lost from employment, again it was spent on services. At the grassroots level, though it is even more shocking when you compare the amount spent on services and the fact most of it in childhood, for example, is spent on special education (The Guardian, 2014). These children are not being adequately prepared for adulthood, as shown by the loss of money through employment. All this has an impact at the family level for parents and carers of autistic people and in turn the child or adult with autism. The money is not being used correctly, and where it is being used correctly, the services are usually lacking. Children with autism face a “shocking lack of consistency” in the quality of council services across the UK, according to autism education charity TreeHouse (2009). It is at this point that my focus turns toward education and teacher training.
The number of children receiving extra help for autism in schools has grown with a 78% rise since 2010 (DfE, 2015). This startling statistic, provided by the UK government, shows that autism needs to be taught to teachers and would be teachers alike. I know from my personal experience of my daughter’s school the teachers, there at least, get maybe a day if that on autism training, and even less for ADHD. This training is not mandatory however as NAS (2016) argues autism training is not mandatory for teachers and some have no special educational needs training at all. This situation needs to change and hopefully Ambitious About Autism’s campaign “when will we learn” (AAAa, 2016) will turn the tide on this dire situation and it’s a campaign I fully support. The need for change has also been highlighted by teachers themselves by a survey of teachers in 2013 found that 60 per cent believe they haven’t had the training they need to teach pupils on the autism spectrum (NASUWT, 2013). This information tells us that the next generation of autistic pupils will be failed by the system, just like so many before, unless we can cause change. It is not fair for our children who, let’s face have a hard-enough time as it is, will struggle in school and not because they are difficult or not bright enough. Simply put these kids just need the right encouragement and understanding to flourish and turn out to be outstanding adults. Maybe if this happens we will see a new generation of autistic adults going into teaching, and who better to teach our autistic children. If this utopia was to be achieved it would benefit society and show that we truly live in enlightened times. However, to ensure a bright future, it’s the present day that needs fixing.
Like everything in life money is always needed, like the famous song lyric from Cabaret “Money makes the world go around” (Ebb & Kander, 1966) The funding for the ideas presented above and in part originally by Ambitious About Autism, could possibly come from the amount spent by local councils on EHC tribunals. With statistics gathered through the freedom of information act 2000 (UK, 2000) Ambitious About Autism (AAAa, 2016) argues that the cost of tribunals to local authorities has more than doubled since 2010 with them spending just over £3.5 million last year. It is clear to see that the cost for tribunals alone is a lot of money, in fact, it is this money that could be used to train existing teachers or trainee teachers all about autism. With the current pay scale of a teacher being from £22,224 to £32,831 per annum (Prospects, 2016) Ambitious About Autism (AAAa, 2016) continues their argument by stating that this is equivalent to 157 extra newly-qualified teachers in the classroom. Although £3.5m is a lot of money, it pales in comparison to the £32bn spent as stated above.
When talking about the cost of autism for UK families it is not just the financial implications that come into play, arguably the emotional cost on the person with autism and their families can be devastating. I am one of the lucky ones, my family has survived the autism gauntlet for over three years now, and we are still together. Although there has been and will be in the future some very tough and trying times, we have and will continue to prevail. But what of the families and people with autism who are not so lucky? Nearly three-quarters of parents of children with autism say that getting them the right support in school was so stressful it caused them to lose sleep (AAAa, 2016). If we, as parents are getting this stressed out, how will our children react? We all know that kids are excellent at picking up on things, and even though kids with autism have social issues, they seem quick to pick up on unrest in the family home. That shocking statement above goes to prove how hard it is being a parent of an autistic child, and this stress is only about school, what of the issues with outside help and the obtaining of such help? The National Autistic Society in Northern Ireland reported only 8% of those in our survey felt that services for autistic children had improved in the last three years (NI, 2016). The situation is not much better here in England with only 16% of diagnosed autistic adults in England are in full-time employment, and two-thirds are not working at all (NAS, 2016). Is it any wonder everyone gets so stressed out about autism?
It is not all doom and gloom however as I stated above you can prevail, it is hard no doubt about it, but can be done. There are a few charities out there like The National Autistic Society and Ambitious About Autism who can help and who are trying to effect change in government policies. However, over the past three or so years we have learnt that the best resource for help is each other. We can help ourselves by sticking together and embracing autism not hiding from it. I know there will always be the element of society who will say it is not a real condition or my child does not have that. Back in the real world we who are in the know stick together, and there is a wealth of information out there to research, and it is something we as parents must do to help ourselves, the NHS will not do it for us. There are the social networking sites too such as Facebook and Twitter which are also invaluable tools, especially for those of us who feel isolated and cut off from the world. The one thing about the state of autism in the UK now is that it can only get better and it will. I believe that there is a new generation of people with a new appreciation of autism and are ready to challenge and change the norm, and I am proud to say that I am one of them.
