Hope for ASD Parents

Has your child just received an Autism diagnosis?

Hope for ASD Parents
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I have Aspergers myself, but I’m not a parent, and I don’t have a kid on the spectrum. I have been one myself, and can give you insights into what’s happening on the other side to help you understand what’s going on, but I haven’t personally stood in your shoes.

The wise words I’ll be sharing in this post today were compiled from interviews of parents who have been there… and are still there! I asked them:

“What message do you have for parents of newly diagnosed children?”

THE MESSAGE FROM PARENTS:

You may or may not be surprised to hear, that despite a very wide range of experiences, the messages were astoundingly similar, and very clear!

Raising a child, any child, is just plain hard a lot of the time – and parenting an Autistic child is no exception. So, eager to offer support and encouragement they spoke predominantly to these difficulties and challenges.

For those going through a particularly tough time right now, the message is tha

“Things WILL improve. It will not be overwhelming forever.”

Or as one put it, “Things that are a really big deal now – will not be a big deal later”.

When things weren’t going well many said they went through a period of self-blame. It’s only natural to ask yourself the question “am I doing a good job?” So, if you’re doubting yourself, just remember that the world wasn’t built for autistic people, which means, that when we’re having a hard time, it’s not your fault. It’s not your fault. You’re doing a good job. Even by just showing up every day for your child… you are doing a good job.

When society excludes us and judges us for being ‘different’, it excludes you and judges you, and that can be hard. Many of the parents spoke to me about feelings of isolation, and said it’s incredibly important to find a supportive network for yourself and your family, and to give yourself permission to seek help for yourself.

One said, “I’m sorry if this is really blunt but you don’t have to pretend everything is perfect! It can be both (good and bad) from one day to the next.”

GRIEF:

There were a wide variety of reactions to getting a diagnosis, and among the most common were grief, and relief. So whatever you’re feeling, it’s ok, you’re not alone. Whatever your situation, you’re not alone.

So, I want to speak to that idea of grief really briefly… for many, getting a diagnosis was a massive milestone, a big step forward, finally getting some traction, finally making some progress!! But we don’t need to feel positive every second of every day. Grief is a real thing, and if you’re experiencing it, then as an adult proud to be on the Autism Spectrum, I’m here to tell you that you have legitimately lost something… something that EVERY parent loses. The first time you held your little baby in your arms you had a grand vision for their life. For other parents this fantasy may disappear slowly over many years. The first time he chooses tennis instead of football, or when she chooses law instead of medicine. An Autism diagnosis can shatter that dream in an instant…

And in place of this fantasy you receive instead the real gift of a unique human being, one who will surprise you and inspire you in ways you cannot possibly imagine! Wow, you are in for one incredible ride!

As one parent put it, “If you have expectations, you need to grieve the loss of the child you thought you wanted, and then you will find your joy in the child you have.”

ADVICE:

So naturally, when I ask the question, “what would you tell the parent of a newly diagnosed child?”, I got a LOT of advice, tips, tricks, WARNINGS! So many sage words of wisdom…. I’m only going to share two today.

  1. Very practical. Look up sensory needs. Getting the sensory environment right can make a MASSIVE difference!
  2. Get to know Adults (or even teenagers) on the Spectrum. It’s only natural to worry about a future we can’t see. “Will they get a job? Will they have friends? Will they be happy?” Every parent does. You love your kids! It’s only natural!
    So don’t buy into the doom and gloom. If you want to learn about Autism, by far the best way is to go out and meet real people and hear real stories. You’ll soon find it’s an incredible world with a lot to look forward to at every step of the way.

Actually, I changed my mind, I’ll share one third piece of advice. As a parent you now have an insight as to what it feels like to be on the Spectrum. Let me explain. Life is full of challenges right? The only difference is that most of the population have kind of the same challenges, which means that they can follow generic advice and most of the time it works out – problem solved. For me, often when I encounter a problem, I look around and ask “how does everyone else handle this?”, only to discover that no-one else has this problem!

So with that in mind, the third piece of advice is this: Do what works for your family.

Don’t be afraid to try new things. Don’t be afraid to ignore advice if it’s not working. You don’t need to know all the answers in advance. If one thing doesn’t work – try something else and you’ll get there eventually.

Unfortunately there is a lot of generic advice (even generic ‘autism specific’ advice) that won’t work in your situation, just like there’s a lot of generic advice that doesn’t work for me. I don’t care if it works for 99% of people! That’s no consolation! Unfortunately, a lot of the time people respond badly to that. “If you refuse to follow my advice”, they tell me, “then your problems are your own fault.” Maybe some of you already know what that feels like…

So, Anyway, sorry – getting carried away.

The point is that if you have a kid on the spectrum you’re in for one incredible ride. In the words of Autism Advocate Daniel Giles OAM – who I interviewed just recently“Autism isn’t a rosy journey, but it’s been an amazing journey nonetheless”.

That said, if it’s tough for you right now, if it’s REALLY tough….

Listen to the message of support from other parents like you.

Be assured that things will improve. It will not be overwhelming forever.

As one said, “NOTHING in my life made me grow as a person more than learning to parent 3 kids with autism.”

I’m sharing this message because if we support each other through the hard times we can celebrate together in the good times, and as an adult on the Spectrum I can assure you there will be plenty of good times!!

So that’s all from me. I hope you enjoyed this video. If you know other parents like you, show them some love and support by sending it to them too!

Lego-cropped.jpg

In the words of a very small, yet exceedingly wise yellow plastic figurine…

“Everything is better when we stick together” – Everything is Awesome (The Lego Movie)

 

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