‘Autism isn’t the end of the road, it’s the beginning of a journey that never ends’.

Steve Dixon from the Sycamore Trust a charity that helps youngsters with autism from three different boroughs including Havering, today writes for the Havering Daily:

A few weeks ago the government published its report into Special Educational Needs and Disabilities.  At Sycamore Trust we always welcome reports of this nature, as they very often highlight the gaps in provision and it usually puts the SEN debate at the top of the news agenda, although in the current climate, it is only for a very short time.

These reports are always done with the best intentions, and they are always followed up with lots of earnest and doubtless sincere statements from politicians at all levels, promising to address the issues raised.  More often than not, that is as far as it goes.  Which is not to be unduly critical, it’s just that the recommendations usually involve pumping more money into the area but by the time that happens, there isn’t really enough cash to do everything that’s needed and the public agenda has inevitably moved on to something else.

At the sharp end, we’re realistic about what can be achieved.  We’re all adults and we know that there are currently many calls on the public purse, but there can be little doubt that as a society we are letting a generation of SEN children down.  At Sycamore Trust, our area of expertise is Autism Spectrum Disorder (ASD) and we know that autistic children grow up to be autistic adults.  Our view has always been that if we can access these individuals as children, we have more chance of preparing them for later life and maybe we can help them to become valued members of the community, rather than a social care statistic in later years.

Which is not to say that we wouldn’t appreciate a slice of the cash that has suddenly materialised.  There are enthusiastic, if vague, promises from senior politicians relating to NHS funding but on the front line we must deal with real issues instead of those written large on the side of a bus. However,throwing money at the SEN issue isn’t the only solution.  We need more knowledge and better training for GP surgery and school staff, and we need to acknowledge the specialist nature of what is required.  In too many cases, overworked SENCO’s at school are having to teach classes and are unable to aid those children that need additional support.  In an ideal world, the SENCO would be a specialist, singular role, with access to all the support and services he or she might need.

One area that the report highlighted was what it referred to as the ‘treacle of bureaucracy’ and that is certainly our experience.  We are regularly contacted by parents and carers at their wits end, because they don’t know where to turn for help and guidance.  And whilst we do everything we can to help, we’re not a branch of the NHS – we’re a charity, so we have to make sure that we spend valuable time on applying for grant aid, fund raising and bucket rattling, instead of providing essential services.

We often hear of parents who have been given a diagnosis and a follow up appointment in six months’ time, so it’s no wonder that the government report concludes that children and their families are being let down. If you do get a diagnosis, that’s great, but finding out that your child has Autism isn’t the end of the road, it’s the beginning of a journey that never ends.  Autism is a lifelong condition and can never be cured, so for some, a diagnosis is only confirmation of what they already knew. In some cases, families need additional CAMHS support for their young person, but this isn’t always available. but families are no better off once they know.

It’s the kind of thing that parents are dealing with on a dailybasis. They are battling to get support for their child, but because of school budget cuts, some schools are unable to give children the assistance they need.  Many families ask for an Educational Health Care Plan (EHCP) and this is an incredibly complex and time-consuming process for parents to navigate their way around. 

So, what is the answer? Well, there is no easy solution, but in terms of Autism awareness, more funding would be hugely welcomed.  As a hidden disability, it’s still not acknowledged by a large percentage of the public.  Mandatory Autism awareness training for all front-line public services would go a long way to putting that right, as would proper signposting from all local authorities, GP’s and schools.  We do our best for the residents of Havering, Barking & Dagenham and Redbridge, but what about people outside our boroughs?  To whom do they turn?

Ultimately, it needs a shift in perception from everyone, public and politicians, to recognise that there is a generation of SEN children who need extra support if they are not to be side-lined by society.  And employers need to commit to their Corporate Social Responsibility promises to make sure that not only are there meaningful jobs available for some of these young people, but that their workplaces and staff are Autism-friendly as well. Remember, in many cases, Autism can be a wonderful skill and adults with ASD can turn out to be highly regarded employees because of the very things that mark them down as different.  With that, we can help these individuals to become both valued and valuable and in a civilised society, isn’t that the very minimum we should expect?

Sycamore Trust Autism Training Services now offers Autism awareness training, delivered by young people on the autistic spectrum with real life experience of the condition.  The training is recognised and accredited by the Continuing Professional Development Standards Office. For more information, go to www.sycamoretrainingservices.org.uk