Before I continue, I must say this 5-minute read has been difficult for me to write because it brings up all the emotions we experienced when our child received the diagnosis we advocated for. It still shakes your world in a way you never knew. You will pick yourself up, learn, and adapt. Give yourself time, space, and be gentle with yourself. You will not get everything right the first time or even the second!
There are three perspectives to be understood here:
- The parents supporting the child.
- The child receiving the diagnosis.
- The sibling/s of the family.
Each of these groups will experience the diagnosis differently.
Before writing this part, I discussed with my daughter how she remembers everything and what the diagnosis means for her. After a couple of smart comments, she did say at age 8 it did not mean very much to her. She understood that she was different from other children, but, as she pointed out, she already knew that. To an extent, she did know; she did behave and react differently from most neurotypical children around her. Upon her diagnosis, she received therapy/coaching to better understand Autism and what it was.
As she has gotten older and developed physically and emotionally, she has received therapy/coaching to help her process what is happening at that point in time and also to learn more about Autism and what this means for her. I was asked, “Why do you not do the therapy/coaching session for me? Why do I have to go and see those people?” I pointed out to her a situation during lockdown. The lessons from school were online, and the children were given instructions on what to do, how to do it, and how to use the system to talk and get the teacher’s attention. Needless to say, most of the children did not stick to the rules; they were messing around, twirling on chairs, singing, dancing—anything but work. For Amelia, this was a huge sensory overload, and she went into meltdown.
Myself and her teacher came to an agreement that Amelia would come online for the first 30 minutes, then come offline until a pre-agreed time. This worked well at reducing the sensory overload, but it highlighted that Amelia’s view of the world is that everyone has a specific job. As she very clearly told me, “You are my Mum, not my teacher.” She did remember this and agreed that it would not work with me coaching her. As she has gotten older and learned more about Autism from various sources, she has become much more aware of how she functions in the world around her. She has learned to communicate her problems better, and we have learned to listen better.
Through communication, she has explained how the sensory overload affects her, so now she has earplugs that dampen the noise by 50% or 100%, and she likes them, and they work well for her. Amelia likes her life organized; she likes to know what is going on or should be happening when. We started off with a wake-up and go-to-sleep routine with times on a whiteboard in her room. We have now graduated from this at Amelia’s suggestion to putting timers on her tablet. It’s permanently attached to her hand. Her reasoning for this was to very clearly tell when she got fed up with me nagging her asking if she was on time. She suggested, coming to the solution through coaching, it was her solution, and it works so well for her; the morning and evening routines are not a battleground anymore.
We have always talked about neurodiversity in our house because we are a fully neurodiverse household. So, as Amelia puts it, we talk about it and make jokes about it; it’s not a problem. From group 3 in school, she has been with the same group of children; they have had various neurodiversity differences explained to them. Yes, there have been one or two horrible things said, but that is children doing what they do. Because of the continuing discussion in school, as she says, she now feels okay to talk about her Autism in class.
Story from school:
“Mum, yes! This afternoon I was working with B and D. I was helping D with his maths, but I was really tired and was not wanting to make eye contact. D said I was being rude because I was not making eye contact. ‘Oh, okay! What was your response?’ ‘I said, sorry mate, not today; my battery is running on empty.’ B then turned around and said, ‘Yeah, I am with you; it has been a busy day.'”
I asked her if she felt comfortable doing that; her answer was definitely; they know me and why, so they should just get on with it.
In her words, “If you work out how to do something or get it working how I want it to work; life is so much easier.”
In translation, what she means is that as she has gotten older and with support and improved communication, she has set her environment to a level that allows her to do what she wants to do with enough energy to do it. For her, as she has grown to better understand her uniqueness, embrace it and work with it, not against it.
I am not saying this works all the time because it is not perfect, and we do still have meltdowns. Although they are fewer and shorter, and we are in puberty, which is another one to add to the mix.
Amelia’s Hobbies:
- Walking in nature: it’s quiet, few people; she will sit and observe.
- Springboard diving: off a 3m platform; this is all about precision, detail, and very disciplined.
- Drawing/sculpting: any form of crafts; this is a gift.
To get to these hobbies, we have been through many others. Some she would have stayed with had there not been too much noise and not listening from other children. The hobbies she has now have been around for a while and are definitely sticking. For her, she understands what it requires to function and creates/manages her environment in a way that works for her. The diving she is very good at, but she will not enter a competition because it would give her too much mental stress and in turn, physical stress. She has opted to go into the non-competition group; for her, that is good. She is achieving her goal of learning to dive very well; proud Mum, without it causing undue stress.
For Amelia, what did getting a diagnosis mean for her? Not a lot; she knew she was different. What has having the diagnosis allowed her to achieve? A lot. It has enabled her to better understand; as she has gotten older, she is better able to equip herself with the support she needs and the confidence to follow through with life.
I was diagnosed as severely dyslexic, discalculic, and dyspraxic at age 33, partway through a master’s degree. Being diagnosed at that point shocked me to the core, but when I understood what dyslexia was, it explained so much. I decided to take all the support I could get, learn as much as I could about how dyslexia can impact a person, and then use that knowledge to improve my life. I took that diagnosis and used it for everything it was worth. I successfully achieved my MSc and went on to work in the field.
We did exactly the same with Amelia’s diagnosis because it worked for me and she was too young to really understand. Now we are at the stage where Amelia can better understand; she knows her needs, and she is allowed to make her own decisions relating to her support needs. Our overriding aim has always been that Amelia will be able to look after herself, make decisions, and live her life how she wants to. This approach has been our way of achieving this goal.
