There is a process one goes through to get to the end diagnosis of Asperger’s Syndrome.
Often many of us feel like we don’t need to be told by a doctor what seems so incredibly obvious, but there are good reasons to go and get it formally done anyway, particularly when dealing with a child (see Before Diagnosis).
Of course, it’s good to keep in mind that nothing has changed. That person is still just the same as before. Asperger’s Syndrome is not an illness, and nothing to be ashamed of. It’s just a different kind of brain, functioning differently.
All of the people who accepted their Asperger loved one before already knew that he or she was a little different. And loved him/her anyway.
Or did they really know?
In many cases, extended family members – like grandparents – don’t get to see those warning flags. Our Asperger sons and daughters are very good with one-on-one contact and excellent at dealing with adults. It’s with peers – and groups – that they often have difficulty.
It’s not comfortable to let relatives know what’s going on – diagnosis, plans for therapy, whatever – and then have them eye you disbelievingly. To hear them gently suggest that the child seems fine to them. That there might be some overreaction going on.
It takes time for people to observe with newly opened eyes, to confirm for themselves that something is a little off.
How did we handle this? We asked these relatives to take our son to a cub scout event.
No, we didn’t demand they go, or exclaim about how they would see and wouldn’t they be sorry! No, we just asked them if they’d like to go (and of course we trusted them, and of course he was pleased as punch to bring them).
They came back convinced.
Just seeing our son – the beloved relative who was always so sweet and lovable – trying to interact with others but failing, just seeing him act oddly and not respond to children or adults was enough. It was the proof they needed.
If I were to do it over again, I would also hand them All Cats Have Asperger Syndrome, a lovely easy-to-read book (see above). It captures everything so beautifully, with humor and cute pictures. It’s a great introduction to Asperger’s Syndrome book, appropriate for grandparents, baby sitters, parents, siblings… really anyone, of any age.
Once they were on board and understood – this took time, and we didn’t rush it – their help was invaluable. We taught our son social skills which he could then go and practice with them, in a loving environment. They reinforced basic courtesy and general social rules with patience and understanding, which he desperately needed.
Having them with us, instead of against us, meant a world of difference to our son and his development.
Not everyone will react this way. People see what they want to see, and believe what they want to believe. Many people don’t need a label at all, and are quite capable of loving and supporting people no matter what.
These days, everyone who needs to know, knows. My son is proud of who he is, and has no problem telling people that he’s an Aspie (or has Asperger’s Syndrome). And grinning confidently while he does it.
Note: This was written in response to questions about how we handled letting relatives know about the diagnosis. It may be only one example, but it’s the one that stands out most in my mind.