To Tell or NOT to Tell, and WHAT to Tell?

I regularly get asked whether students should be told they have Autism, Asperger’s, ADHD, etc. I believe telling children about their ASD helps them understand and actually increases their participation and engagement.

“Until recently, much of the literature has focused on sharing the diagnosis with parents and carers. Relatively little attention has been given to explaining the diagnosis to the child. Accounts from adults with autism and Asperger Syndrome have suggested that being told their diagnosis is largely positive and beneficial. They report that this helps to make sense of themselves to understand the behaviour of others and enables them to develop strategies to manage situations they find problematic. Sharing the diagnosis also allows individuals to access relevant literature and to make contact with others with autism or Asperger Syndrome. Those who feel confident and positive about their diagnosis are likely to fare better than those who know little or who have a negative view of autism.” Dr Glenys Jones, Autism Centre for Education and Research, University of Birmingham.

Disclosing the Diagnosis

By Anna Tullemans

Parents may fear that by giving children information about the diagnosis that their child may not understand or that their child may become angry or depressed because they have a disability. They may even think that the child may use this diagnosis as an excuse every time they cannot do something. Some of these problems may happen. However they can all be dealt with when needed. Some of these issues may surface whether or not the child knows of the diagnosis anyway.

As a parent you need to decide what to say and how to say it. You can begin by talking about strengths and difficulties that the child may experience. Inform the child that the name for these qualities is Autism / Autism Spectrum Disorder / Asperger Syndrome.

8 Steps to Discussing the Diagnosis with a Child

  1. Assess what the child already knows and is ready to hear.
  2. Express the news at the right level, i.e. explain ASD in terms your child can understand (See page 76-78 of Disclosing the Diagnosis for ideas).
  3. Be positive. Choose a time when you are both feeling good and talk about strengths and challenges.
  4. Tailor your explanation to your own child’s specific strengths and challenges.
  5. Begin with positive aspects of ASD a. What is your child really good at? b. Do they have a special topic? c. “You can ….and I love that about you”.
  6. Move on to the negative. a. What does he struggle with?
  7. Stress that you will be there to answer any questions.
  8. Tell the child there are others who also have the same diagnosis.

For those parents who think their child may reject the diagnosis, a less direct approach may be required. You can use children’s books and novels, where characters have ASD. You can help children identify the characteristics they have in common with the character. This is a great way to start a conversation in a non-threatening way.

There is a lot of information on disclosing the diagnosis to siblings, grandparents, aunties, uncles, other family members and friends in Disclosing the Diagnosis by Anna Tullemans.

Disclosing the Diagnosis

By Anna Tullemans

Here is a book that most families ae going to devour from cover to cover. It gives really great tips and ideas on how to discuss the issue of diagnosis with your family, friends and your extended families.

$29.95Buy/Invoice (ORGS)

 

When I asked on my Facebook page (Sue Larkey) “How have you shared diagnosis with school, other children, siblings, families etc.?” there was a large range of responses and I thought they might be helpful for schools and families. Here are a few interesting ones:

“Everyone!!! It creates a better understanding for everyone involved. It’s NOT something to be embarrassed or ashamed about. Be proud!!!” Rachael

“My son (8yrs at the time) wrote a book titled ‘My Asperger’s’. He read it to the class. The school library published it, and it is still on the shelf today. An amazing and supportive school community.” Charmaine

“Diagnosis for my son opened a whole lot of self-acceptance for him. He realised that although he always felt different, that there was a group of people who are the same as him. We viewed diagnosis as a tool to help us and others best help our son. School has been very supportive, and family have had greater understanding of the ‘weird things’ that my son has done.” Jenny

“We tell people on a ‘needs basis.’ But my Asperger son wanted to tell everyone!! After 8 years of confusion and thinking he was mad – and bad – he was very relieved (as we all were). We answer any question he might have about his Asperger’s and how it affects him and he has taken it very well. We do tell people if he needs to be with them or in a situation he may not handle very well. I’m very proud of my son and his ‘quirks’ and I’d much rather people understand his little ‘ways.’ He loves that we aren’t ashamed of Asperger’s – in fact we are quite loud and proud!” Nicole