AUTISM COLUMN: Why parents of autistic children have some of the highest heating and electricity bills from Crawley News.
An extract ‘IN her monthly column, Maria Box, who lives in Pound Hill, shares the ups and downs of life with her autistic son Ryan. ……..’
This is a great article and while, initially the comments are relating to utility costs, it expands into how the family have to contend with the ups and downs of caring and supporting a family member with autism.
How many of us would be able to undertake this 24/7? But is it a matter of choice, for your family comes first and if you do not do it who would?
However, the autistic spectrum is vast and is only but one of the many conditions relating to learning disabilities and each one having themselves an extensive spectrum. In many cases the persons will have not just one condition but a varying number. While each condition will have its own defined traits, the persons concerned are individuals and as such, it may be that no one person will be exactly like any other in how their conidtions affect them.
This creates many problems when dealing with the respective professional bodies, such as Social Services*, education, health and so on. But these bodies like to label and fit people in boxes, so to speak. For this to be managed easily its requires a level of conformity, which in many cases, if in deed any, will not be always possible. This requires a great deal of flexibility, listening, understanding and more from these bodies, which many are reluctant to do. When this is in conjunction with the current austerity cuts being imposed on many of these bodies by the Government, it makes this reluctance even more so, thereby creating even more pressure on the families concerned.
Many of the general public are unaware of the issues families have regarding relatives with learning disabilities, autism and other conditions and for many solely rely on the messages emanating from Government and many of the media. So, many of the public, unfortunately link disability, with fraud and scrounging which is certainly not so for the majority. These families provide this care and support 24/7, not only during the childhood years of their relative, but well into adulthood and beyond and many receive no monetary benefit for doing so. But the pressures on these families is great and without the required assistance from the respective bodies, many of the members in the family will be at a greater risk of health problems and others.
With articles such as the one above from Crawley News, lets hope the message is far reaching for what, how, when and why families do needs assistance so they can provide the essential care and support for their relatives No they should not be classed as scroungers, as they are far from it, as they are saving the country money, for the care and support has to be provided and it would cost far more if the state had to provide it all.
* Contains public sector information licensed under the Open Government Licence v3.0.