We have recently been attending some seminars and courses about supporting parents with children who are on the autistic spectrum, to help our own understanding of the disability, and to learn how we can best offer parental respite.

Some parents are struggling with children who have acute, debilitating autism, where they cannot communicate and sensory, physical and emotional difficulties mean it is near-on impossible to lead a normal life without help 24/7. This is an area where Absolute Healthcare specialise in giving parents much needed respite breaks but also medical and personal care for their child.

On the other end of the spectrum, parents of children with high functioning autism (or Asperger’s) struggle in differing ways but are just as much in need of advice and support from professionals, because this form of autism is often called ‘the hidden disability’. To the average person, a child appears normal, and their struggles are often overlooked by teachers, friends and family, leaving parents at their whit’s end.

The latest statistics for autism are that 1 in 100 people are diagnosed with some form of the disability. Up to 1/3 of children affected by autism will start to regress in their development from the aged of 2 onwards. 75% of those with autism are male and it affects over 700,000 people in the UK. It is now proven to be a genetic disability that runs in families.

Children are affected mainly with sensory disorders (afraid of noise, light, dark, touch, smells, taste), they suffer with intense anxiety, have a need for rigid routines, immerse themselves in special interests, often have an inability to speak (even into adulthood), or have an inability to stop speaking. They can have problems with anger management, and social interaction, needing to be taught the social norms that we take for granted.

They have emotional immaturity that often does not improve with age, can be incredibly sensitive and are prone to meltdowns (likened to anxiety attacks) when their brains cannot process or accept what is going on around them. They develop slower with motor skills and when emotionally charged, they often lose control of their bodily movements.

Living with children who have autism, it seems, from the parents we have spoken to – isn’t easy, especially without support.

What Absolute Healthcare have been shocked by is the desperation many parents are in, trying to get their child assessed and diagnosed for autism, in order to access the support and disability / school funding they need to make life that bit easier for the child and their wider family.

The National Autistic Society says that current delays between being referred to an autism specialist and the eventual diagnosis are unacceptably long and putting families into crisis.

A recent report by Public Health England has shown there is a huge difference in waiting times for diagnosis, across the country, meaning like many other NHS services, it’s rather a postcode lottery. Jane Harris, Director of External Affairs at the National Autistic Society, says, “At the moment people are waiting months - if not years - for a first appointment. If they're adults that might mean losing their job, if they're children they might be excluded from school. It can be really difficult.”

The Public Health England report, published last month, showed that some people in the South East of England were waiting as long as 90 weeks between a referral to an autism specialist and a diagnosis. The average wait across England was 13 weeks. The national guidelines from NICE say the wait between referral and diagnosis should not exceed three months.

In many ways the increased awareness of autism is fantastic, especially for those who live with the disability. A child born with autism in this generation is far more likely to be empowered to live as normal a life as possible, than they would have done were they born 20 years ago, and that is something the UK should be proud of, for it is not still the case in other European countries. However, the National Autistic Society says this increase in awareness has led to more referrals, resulting in huge delays in the system.

But they say the real issue stems from a lack of monitoring. The reasons for the delays could differ in each region and without monitoring of waiting times, it is hard to know why there are backlogs, and what is needed to fix the problem.

Absolute Healthcare have recently partnered up with SENDirect to try and spread the message that we’re here for parents who need respite care for their children – because every parent needs a break, a chance to talk with their partners, to share strategies, to plan for the future, to fight the big fight for their child – and most of all, to let their hair down and remember what life’s all about from time to time.

If you know someone who could benefit from our care service, give us a call on 01420 769658