There are pros and cons involved with undergoing assessment for a possible diagnosis of Autism Spectrum Disorder. Before referral, please reflect carefully.
Autism is a lifelong developmental condition which affects the way individuals communicate with and relate to other people. It also affects how they make sense of the world around them. Autistic children and adults often prefer routine and may struggle with change. They may have particularly intense interests and may be good at noticing patterns and small details. Autistic children and adults frequently suffer from high levels of anxiety due to their difficulties in making sense of what is going on around them. It is a spectrum condition, which means that, while all autistic children and adults share certain difficulties, their condition will affect them in different ways.
Autism is considered to be a different way of thinking and experiencing the world. However, Autism is often defined and described in terms of deficits. A diagnostic team needs to do this in order to determine what supports are needed for your child. Autism is also associated with strengths and there is an increasing awareness of autism as ‘difference’ rather than ‘disorder’. Autistic children have things they're good at as well as things they need help with. There is often an attention to detail and a focused concentration which can be a bonus at school and in the workplace. Many children develop expert knowledge around an area which particularly interests’ them. Your child may even improve your understanding of the world as they are non-judgemental, have unique thought processes and distinctive imaginations. Their integrity, honesty and loyalty are characteristics we can all learn from.
The outcome is not certain
An assessment does not necessarily lead to a diagnosis. You may hear that the difficulties you are experiencing are not caused by autism. You will have had a long wait, and you may still remain uncertain about the cause of the problems.
Difficult conversations with your child
If your child is old enough and capable of understanding, they should be fully involved in making the decision to establish a diagnosis. As professionals, we have a legal obligation to consider their wishes.
Children under the age of 16 can consent to their own assessment or treatment, if it is believed that they have enough intelligence, competence and understanding to fully appreciate what's involved in their treatment. This is known as being "Gillick competent" - http://www.nhs.uk/Conditions/Consent-to-treatment/Pages/Childrenunder-16.aspxPros
If accepted for assessment, your child will be asked for their views. It is, therefore, very important that you have discussed this with them thoroughly before they meet our assessment team.
At the end of the assessment, you will be told either that your child does or does not have an autism spectrum disorder.
You and your child need to be ready to experience a multitude of feelings: possibly frustration, grief or maybe relief.
Some people prefer not to get a formal diagnosis for their child. Sometimes a parent feels that their child will make greater progress if they do not think of themselves as having a label.
Reasons that people can feel that seeking a diagnosis can be helpful:
A diagnosis can:
• Give better understanding regarding behaviour, strengths and needs, and appropriate support
• Explain the reason why a child / young person always felt different, therefore increasing their own confidence and understanding of themselves
• Make parents feel more able to cope with other people's reactions to their child and lead to a greater sense of confidence
• Give parents and their child a clear and realistic sense of the limitations and challenges the child may face as a result of the disorder
• Help schools find more specific information to give them a better understanding of a child’s strengths and difficulties
Extra help in schools is not dependent on a diagnosis. Help is provided based on a child’s individual needs. However, a diagnosis may help a school to identify needs more clearly.
Some families may be entitled to benefits, such as DLA, if their child’s difficulties have a great impact on their ability to function at home / in the community. This should not be dependent on a diagnosis.
Every child/young person is different and as a parent/carer you know them better than anyone else. It is important that you consider the implications of a diagnosis for your child, not just in the present, but also considering the long term implications for them as they enter adulthood. If they are old enough and have the capacity to do so, it is important that you also involve them in this decision.