QMy seven year old son has recently been diagnosed with autism, which we have mixed feelings about. He is very clever and articulate and in a mainstream school but has significant challenges developing any meaningful friendships. He also has outbursts if there is any change or anything happens that he doesn’t understand. Should my wife and I tell him that he has been diagnosed or will this make him feel worse about himself? Should I wait until he is more mature and can understand what ‘autism’ means?
A Hearing any diagnosis can be quite a shock and it takes time to come to terms with what this means for you, your son and your family.
Your question strikes at the very heart of why we diagnose and whether labels are helpful to those who bear them. Let’s think about what a diagnosis of autism means and how it can be used to support your son and to those involved in his care.
Autism Spectrum disorder (ASD), as its name suggests, can present very differently. Given that your son is verbal and intelligent, he is probably on what people call the ‘high functioning’ end of the spectrum. He may have difficulties processing and understanding the behaviour and intentions of those around him and struggle to communicate his own needs effectively. He may come across as rude or insensitive to others, not being able to respond to non-verbal cues. He may have repetitive behaviours, sensory needs, highly focused interests and, like you mentioned, have rigid expectations of routines and poor emotional regulation.
Your son’s way of interpreting and processing the world around him is atypical and may challenge society’s norms and expectations but this does not necessarily mean that it is a deficit. Some people prefer to use the term ASC — Autistic Spectrum Condition — which is less pathologising. Autistic people have many strengths alongside their struggles. Unfortunately, it is often difficult for them to draw on or appreciate those strengths because feedback from being socially unsuccessful can so deeply undermine their confidence and sense of self.
As you can imagine, being surrounded by people who behave and communicate differently can cause high levels of anxiety and people with ASC are more likely to develop mental health difficulties. Managing autism well is a delicate balance between helping a person with ASC adapt to those around them in a socially acceptable way (commonly called masking) and adjusting the environment to accommodate autistic people’s differences. Masking is often exhausting, stressful and anxiety-inducing, although it can also sometimes feel good to behave in a socially conventional way.
In order for those around your son to be able to support him they need to understand his needs fully so that they can build on his confidence and strengths. To do this, you will need to inform those who care for your son about his diagnosis and explain how it presents for him. If the people in your son’s network alter their expectations, predict possible meltdowns and use lots of explanation and strategies, your son will feel supported and confident enough to be himself.
Herein lies a problem.
Once you are speaking to others about your son’s diagnosis it is very difficult for him not to find out. You will start to conceal conversations from him and speak about his diagnosis in hushed terms, engendering feelings of shame or embarrassment around autism even before you have told him about it. At age 7 your son will not have many established stigmas about autism; he probably won’t even be familiar with the term. His attitude to ASC and his relationship to his diagnosis will mirror yours. Further, your son already knows that he is different from those around him. Giving him the language to explain and communicate those differences ultimately empowers him to understand himself and verbalise his needs.
I would recommend that you and your wife think together about what a diagnosis of autism means to you. Although having an autistic child will present challenges, can you still believe in your child’s abilities and in his future? Do some research, speak to other parents and read about celebrities who have autism and about what they have achieved. Once you have both come to understand and accept the diagnosis more fully, think about how to speak to your son about autism in a simple, child friendly way. There are lots of resources online to draw on. Reassure him that he is still the same boy as before and getting a diagnosis does not change your love for him. A diagnosis is a way of telling people that your son perceives the world around him differently. It is just a tool to support your son and those who care for him as he navigates life in a neurotypical world and should be used as such. Wishing you lots of luck.
