One of the most exasperating things that parents often have to face on a daily basis is teachers and other professionals who firmly believe that because their child is highly verbal, and can be in fact difficult to shut up, the child is not having problems communicating. Parents who have children with Aspergers Syndrome and High Functioning Autism learn very quickly that ‘they’ are often seen as the one who has the problem and not their child. Parents who have children with autism learn to read their child and they learn to understand how their child communicates or does not. Parents who have children with autism are often the link between their child and the world and become their communicator/ interpreter.
When Tommy or Rachel burst out through the school gates screaming and crying on a daily basis it is the parents who spend hours unpicking conversations that were had in school trying to make sense of them with their child. Often the teachers are unaware that the child spent the whole day not understanding much of what was said to them or asked of them. Or they spent the whole day trying to say something that the teacher or their peers failed to understand.
Children with autism can have a very literal interpretation of spoken word and that can lead to all sorts of problems for them. If the teacher tells them they are going swimming on the bus, or to put their shoes under his/her peg the child will take that literally. So the child is bewildered, stressed and anxious when things turn out differently to what they expected. Non verbal communication is often not in an autistic child’s vocabulary either. Unless someone tells them that there is a problem they simply do not know that there is one. So the ‘hidden’ communication of tapping your foot and folding your arms while you frown at a child with autism is totally lost on them.
The communication problems of children and adults with autism are all too often hidden or masked by them being highly verbal. There is a well know phrase that is often used about people who have problems in communication: ‘not being able to speak is not the same as not having anything to say’. That phrase implies that only people who are non verbal have problems in communicating. There is another phrase that should be used for children and adults who have Aspergers Syndrome and High Functioning Autism: ‘being able to speak is not the same as being able to make yourself understood’.
Children with autism quickly learn how to give the right answer to teachers and adults in authority. The right answer is usually a positive. So if teacher asks Rachel if she understood the question – Rachel will say yes. Rachel will do this because she knows that saying no means that the teacher will explain the question again in exactly the same way and she will still be unable to understand what everyone else in the classroom appears to understand fully.
If Tommy is asked by his teacher if he has had a nice day in school, he will learn quickly that the answer to that question is yes. Saying no will result in his teacher asking him why he has not had a nice day and Tommy will be unable to find the expressive language/right words to explain properly. And so this scenario can play out throughout the school life of a child with autism.
The child learns to look as if they know what they are doing and why. It stops unwanted communications that they struggle to understand.
It can take a highly trained specialist in the field of autism to have the ability to unpick the receptive and expressive language used by a child or adult with autism. Highly trained specialists in autism are very thin on the ground and where autism is concerned (a) little knowledge can be very dangerous thing – for the child or the adult with autism.
If a child or adult came from a different country to live in the UK and for whom English was not their first language, they would probably feel very similar to the way that a child or adult with autism can feel every day of their lives. Being unable to fully understand what people are saying to you or are asking of you can make you feel extremely anxious and stressed.
Trying to communicate effectively with people who do not speak your language can also make you feel anxious and stressed. Children and adults for whom English is not their first language will in time, and with support, learn to speak the language. They might always struggle a little but the longer they stay and are surrounded by the language the more familiar they will become the more able they will become at communicating effectively.
For children and adults with autism, autism will always be their first and primary language. And yet we are doing very little to enable children and adults to communicate effectively. Parents who have children with Aspergers Syndrome and High Functioning Autism often have to fight to access specialist speech and language therapists and no such thing exists for adults.
If you build a house without solid foundations it is going to fall down. If you do not equip a child with the tools to be able to communicate effectively you are setting them up to struggle to communicate throughout their lives.
We expect our children and adults to learn effective communication by sitting next to neurotypical children in schools and in our communities. It simply does not work like that – it is not a process of osmosis. We would not expect anyone from a different country to pick up on how to speak English just by sitting next to an English speaker.
Many of our adults with Aspergers Syndrome and High Functioning Autism have been failed by the school and health system. This is well documented and there is much evidence to support this. These adults have been expected to ‘pick up’ effective communication from their peers and members of their community. The vast majority of adults with autism have spent their entire life with their parents acting as their interpreter /communicator/advocate. There are now a large number of adults with autism who no longer have a parent to do this and those adults who still do have a parent who can support them with effective communication, the parent is often denied the right to do so for them.
Advocates for adults with autism is a big issue. This issue has been highlighted because of the situation that many find themselves in:- benefit assessment/reassessment.
From April 2011 the Contributory Employment & Support Allowance for people placed in the work-related activity group was time-limited to one year. Existing contributory ESA claimants lose benefit at the point they reach one year (including the assessment phase). Those who have been on ESA for more than a year at the point of change lose benefit immediately. Adults who are on/have been on Incapacity Benefit are also having their benefit reassessed via the Work Capability Assessment to see if they are eligible for Employment Support Allowance.
The need for advocacy is recognised and highlighted in the Adults Autism Strategy Fulfilling and Rewarding Lives:
“4.21: We recognise that access to services is inconsistent, and that there are not yet enough advocates available to support all those who would want one.”
The Welfare Reform Bill will substantially increase the need for advocates for adults and it is imperative that advocacy is offered to every adult in a benefit assessment situation and for those advocates to be allowed to enable adults with autism to communicate effectively, no matter how verbal an adult might appear to be.
Autistic people need to be given an automatic offer, on the basis of their autism diagnosis, of access to an advocate, supporter or “communication assistant”. This ought to apply to all people who have an autism diagnosis, irrespective of their apparent communication abilities. It is essential that their communication difficulties and differences, their communication styles and their preferred methods of communication are taken into account and appropriate adjustments made and support ensured. If assistive technology is required then this must be provided before any test takes place.
The change over from Disability Living Allowance to Personal Independence Payments will require every adult who is in receipt of that benefit to have a reassessment. We are particularly concerned about these adults, a great many of whom have had no provision or services or access to any autism specific professionals since leaving Children’s Services.
Adults are being asked to produce medical reports about their condition, as supportive evidence, that they simply do not have. Many are also being denied the right to an advocate to enable them to communicate effectively during the Work Capability Assessment, therefore we are concerned the the same thing is going to happen to adults who have to have a reassessment for Personal Independence Payments.
For some adults the only people providing 'support' and holding evidence of how their condition impacts on their lives will be GP's and even then 80% of GPs who were surveyed by the National Audit Office in 2009 admitted that they do not know enough about autism to enable them to effectively advise or support adults with autism.
We are now extremely concerned about the adults who have no supportive evidence from anyone who is deemed to be acceptable when they find themselves having an assessment/reassessment.
In Sunderland, which is part of an autism cluster group for South of Tyne and Wear, there is a combined population of 500,000 people. The only health services that are accessible to adults with Aspergers Syndrome and High Functioning in the South of Tyne area are services which are designed for adults with autism at crisis point. There are no other health services to access other than an ad hoc pathway to diagnosis which we are currently working on.
Therefore adults living in this area will be unable to access a health professional with enough knowledge and understanding of autism in South of Tyne and Wear even if they are asked to provide supportive evidence following a WCA or PIP assessment. We know this picture will be replicated across the UK.
As Baroness Browning said during the Welfare Reform Debate in the House of Lords last week ‘Aspergers Syndrome is not autism-light’. However that is the way many people view it and that includes professionals who have not been specifically trained to understand the autistic spectrum.
Advocacy has now become a matter of extreme urgency for adults on the autistic spectrum and one which we believe must be seen to be as such across the political spectrum. To deny a person the right to communicate effectively is denying that person a basic human right. It is morally wrong.
Baroness Thomas of Winchester said that many disabled people, knowing that the government wants to reduce DLA spending by 20%, regard the change from DLA to PIP as: "a horrid game of musical chairs...they all think that when the music stops they will be one without a chair."
ACT NOW believes that those most likely to be left without a chair will be adults with Aspergers Syndrome and High Functioning Autism.