Published on 12, July, 2020
Hello everyone!
We would like your help to create a series of practical tips about how to talk to a child about their autism diagnosis. We’re looking for wisdom from parents and carers who have told a child about their diagnosis, and from autistic people who either remember how they were told as a child or can share general tips about how to approach this.
Could you share your insights based on how you told your child about their diagnosis or talked to them about it after their diagnosis, or how you were told or talked to as a child about your own diagnosis? What worked well and what didn't? What advice would you give to parents and carers now? Are there any principles you think they could follow? Any ‘Do’s and Don’ts’ or things to consider?
You can send your tips by replying to this post or submit them anonymously by emailing stories@nas.org.uk. We will use short quotes from the tips we receive on our website and social media channels to share your wisdom with others in our community.
(To see an example of what the series may look like, here are tips about Halloween shared by our community: https://www.instagram.com/p/Cy5TI2sOX49/?igsh=ZnRkeGRpMWx4YXhr )
Please remember this Community forum is public, so don’t post personal or identifying details. This includes, but is not limited to, full names, addresses, contact details, social media, or photographs of yourself.
We look forward to reading your tips!
The Content Team
My younger brother was a fair bit older than some of these posts, about 12, when he was getting assessed for autism. He knew he was struggling, and I, his older sibling was also in the process of being assessed at the time by the adult team.
I think it helped having an older person that we could point to and go 'this person also has it', we discussed strengths and difficulties, so he's very good at getting very in depth knowledge of topics (like space satellites and the immune system) and memorise very precise details (he could and would recite the first chapter of pride and prejudice perfectly) and he struggles with times like break time at school and understanding nuances in social communication. School was amazing, and quickly put in support around difficult sensory environments with safe spaces he could access with his ear defenders and blanket if he got overwhelmed. This support meant that school got a lot better with time.
He took this very well overall, and when he was finally diagnosed his response to the clinician saying he was autistic was 'Autism Pog!' which for those not up on internet speech is a positive term.
We told our then 9 year old that every body is unique; some people wear glasses, some people have inhalers for asthma and some people have autism. Autistic people’s brains are different; it can mean that some things we may struggle with and other things we are amazing at! Like super powers!
He is gifted and talented at maths, years above his peers, so this is his superpower! We focused on the positives and take time when needed to explain some of his struggles.
Our son got diagnosed when he was 8. He knew something was different as he used to say ‘mummy what’s wrong with me’ ‘mummy I feel different’ before all the appointments, I said we were going to help find out what’s going on. We were open with him and got him an age appropriate book to explain a bit better. He say things like ‘my brain is like a malfunctioning computer and all the wires get crossed over’
Once he’d had time for it to sink in proper he said ‘it’s just like a super power mummy’
We initially told our then 5 year old daughter that we were going to see a Dr (for a referral) to see if he could help with why she gets so upset sometimes. Then, when we were granted a referral, I shared a book (lent to us from the school’s SENCo) with my daughter and her twin sister (as I thought it important for her sister to understand what was happening too) called ‘All Cats Are on the Autism Spectrum’ and compared some of the behaviours of the cats to our daughter’s behaviours and explained we thought she might be autistic too, just like the cats. She liked this, especially as she loves animals and both girls understood that she was just a little bit different and that that was ok. I also talked to her near to the diagnosis about how her brain works in a slightly different way to most people and that that was fine and it was important to know so that she could get help with things she finds tricky. Finally got the diagnosis a few weeks ago, just after her 7th birthday (20 month process). As we left the appointment her sister asked “So is L autistic?” And I said yes and asked L how she felt about it, to which she smiled and said she was very happy. Interestingly, during episodes of selective/situational mutism, she meows, just like a cat
We were very open with our son. I have read that children have probably gathered something is going on with all of the appointments and people involved in their lives and it’s best to tell them.
My son was diagnosed at age 8. We told him his brain is wired differently and it’s great as if we were all the same life would be boring!
We explained some things he’s amazing at that other people find difficult and some things he finds difficult other people don’t and that’s ok as everyone needs help with different things.
We explained that it’s very likely his father is autistic too (never diagnosed) and has done really well, his godfather is neurodivergent and has done really well and we are always pointing out amazing famous people who are on the spectrum or have ADHD to him as he has both ASD and ADHD ️.
Hi Online Community Users,
We are posting a reminder to take part in this thread. We would like your help to create a series of practical tips about how to talk to a child about their autism diagnosis.
Kind Regards,