Wordsmith, Teacher & Advocate
Every day, month and year, professionals and experts are getting closer to working out the whys of Autism.
Autism Spectrum Australia (Aspect) has revised its autism prevalence rates from 1 in 100 to an estimated 1 in 70 people in Australia on the autism spectrum. That is an estimated 40% increase or around 353,880 people. According to Aspect CEO, Adrian Ford, the new number reflects recent changes in diagnostic criteria and new national and international research.
But one of the biggest misconceptions is that once you have a diagnosis, you are set with a plan, a how-to and a ‘do this’ now. This is not the case.
You need to become the Planet Spectrum expert when it comes to your little individual.
That’s another reason I wrote Welcome to Planet Spectrum-there was nothing like this available to me at the time. I needed a resource!
First things’ first- Get Educated. As you go along, you will start to establish a bank of information. Build Your Planet Resources; collect the information and literally put it in one place so you can refer back to it.
You can do this, and you will one step at a time. It’s ok if you don’t know what to do, neither did I! But you can and will. Taking those little steps and learning each small thing about your child is like accumulating clues and tools for the box that you can draw from.
As you are building your resources, you will be recording, writing and creating a reference point.
This also helps to alleviate feeling overwhelmed with too much information. Getting things out of your head and onto paper is an age-old practice in self-preservation and usefulness.
You can also use this info to share with your support people. Who are they you ask? Whether you like it or not, you are going to need support-people. They might be parents, grandparents, relatives, friends, professionals, but you need them. This is a community Planet, not a one-man show. Involving loved ones and the folks around you is really important, it can sometimes be hard, I for one never really have been one to ask for help. Ms Independent. Otherwise known as, AKA ‘no I don’t need help, I’ve got this.’ But I promise you it’s not the best road to go alone. Bring in your support, look around, reach out a hand or start a conversation.
Explain to your support people that Autism is a part of your life now and therefore, it has become part of theirs. Quite often loved ones are at a loss as to how to help, what to say, what to do, and how to support you. Start keeping them informed, start that conversation with something like ‘we are trying to find a way through this new information, and it’s making us feel like____________. I appreciate you taking the time to listen.’
Keeping your support people informed and in the loop assists everyone.
Some folks in your life might already do this. Some won’t be, simply because they might not know HOW TO. But the fact is you are standing on Planet Spectrum, so chances are you will come across the most useful and educational point first- so SHARE THEM! If it’s useful and helpful for you and anyone that looks after your child, it’s worth sharing.
Start looking locally for workshops, sessions and insights you can attend about Autism. There are conferences and events in most states, webinars online etc. You need to start educating yourself by networking with others who are sharing Planet Spectrum with you. This book is a great start. I wasn’t a big ‘joiner’, and you might not be either, and that’s ok, but education is everything with Planet Spectrum, and you will collect a treasure trove of useful ideas and tips doing it.
Source a support group. Facebook was an excellent resource for me finding other parents to talk to, laugh with and feel with.
Connecting with other people in similar situations from the comfort of your own home and space can be really positive if used in a positive way. Useful tips, common ground and empathy can often be a great comfort and reduce the feelings of isolation. Make sure it’s a positive environment; you don’t want to be hanging out in-person or online with negative people. Negativity is like the flu and can be very contagious. At the beginning of this journey, you can be quite vulnerable, so steer clear of negative environments.
On a bigger scale, I think it’s really important for people to talk to each other about Autism. Talking about it raises awareness, it informs, it educates others that Autism is just one part of a person. Because right now for you it might feel like the biggest defining moment of your and your child’s life, when in fact it’s only a part of your child. Talking about Autism opens up a dialogue of what others can do to best support.
My hope for the future is that this changes dramatically.
Wit more complete understanding happens for the masses about what Planet Spectrum REALLY is, and how different DOESN’T mean negative.
Ask your support people to attend information sessions, to come along to appointments if you feel comfortable sharing. Ask them along to these events; you are learning together. Back up is always great. I would sometimes ask a friend or relative to come with me if they could, so that should a meltdown occur and I needed to access important information I had help. They can learn too, two heads and two lots of helping hands are better than one.
Quite often lacking knowledge feels like a hurdle to assistance. When people don’t know what to say or do it can end in awkward silences and misguided attempts to help or not help. The stories I have heard from parents who find themselves seemingly alone because everyone around them is at a loss of how to help can lead to frustration, loneliness and ostracism from the community you had before you landed on Planet Spectrum.
It might be that loved ones think they are helping but are coming across as interfering too much. It can swing both ways, and the one answer to both is COMMUNICATION. Calm, pleasant, but informative communication is key.
Once they begin being informed, members of your shared journey on Planet Spectrum, are better equipped to assist and love and don’t forget they too can enjoy and grow with this beautiful little person so much more effectively. It’s beneficial all round.
If you feel like you might be missing out on the activities that you loved before and are feeling left out from now, try and think up a way to change this.
Can you get everyone together in a way that is better suited to your little person’s needs? For example, we felt really left out of a particular Boxing Day cricket match held every year at my sister’s house. It was a family tradition that we now felt we couldn’t be a part of due to the number of people, the noises, the commotion: all triggers to our little guy. If I even tried, it would result in days of distress and trauma at home. Our solution? We all go together and say hello to everyone for about twenty minutes (with fair preparation of course) then one of us returns home with the children so the other partner can enjoy the day and vice versa.
We take it in turns. If you do not have a partner that can assist you, it’s time to make some new traditions. You might miss out on that one event, but you can organise another one that is more’ Autism friendly’. Either by organising some respite or smaller groups of manageable grown-ups.
For example; we have a special tent in Mister’s room, which is his time out area when he feels like space. I will host an afternoon tea or a small group of people in an area I have created that is lovely to be in and is well away from Mister’s room. He can opt to join in, and when it’s too much, he can go and reprieve. He knows he can escape to his kingdom whenever he needs to. We created a new tradition together, and it’s been lovely for everyone. I got a kick out of creating a special space for guests, and he got a ‘magical playhouse’ in his bedroom. It was a positive experience, and this is all about finding positives.
Want to Ponder Autism more with us?
Stay tuned for our next article. Ponderings have affiliated with Planet Spectrum and are pleased to offer you this link to the free resource The Flight Manual.