Saturday 21 January 2017

Welcome New Friend! Welcome to the club!

Welcome to this crazy thrilling journey that is Autism, I'm so glad that you have landed here! It means that you are taking steps in the right direction to get your child the assistance that they so badly need.

Welcome to the club, whether your child has a diagnosis or you are just starting on this journey, you are welcome here. You are now part of a unique group of individuals, that people looking from the outside in, don’t think fit in with the traditional Autism community.

You may have noticed that there was something odd about your child from birth but you just couldn't put your finger on it, until now. It may seem to you that your child changed what seemed like overnight and you’re not sure how to explain it to medical professionals or to your friends and family. You may talk to your child’s teachers and they don’t seem to understand as they rarely get to see this other side of your child that you are explaining.

Your child may appear to have no issues with verbal communication or socializing and people around you will begin to question and challenge your child's diagnosis. Your child's autism traits may not be obvious to those around you, but there are glaringly obvious to not only you but also to those specialists who assessed your child or who have suggested that your child should be assessed.

Once upon a time, your child would have been diagnosed as having Asperger's, not anymore. Due to the updated diagnostic criteria, that term has been abolished and your child now falls under the umbrella of Autism Spectrum Disorder. Although people still use the term Asperger's or Aspie.

Your child won't change with a diagnosis, the diagnosis will give you a better understanding of who your child is, the diagnosis will explain why your child does certain things or behaves the way that they do. Post diagnosis, it is a like a huge "Ah Ha" moment, the light bulb goes off in your brain and it all starts to make sense and you may wonder "why didn't I see this before."

You may start to feel guilty about using the term “autism” when referring to your child. You may feel as though you don’t deserve the right to use that term when you see and hear about individuals who are non-verbal. Individuals who are having a harder time than your child.

Please try not to feel guilty, High Functioning Autism has its own unique challenges and it affects everyone. Our high functioning children need just as much support as others and they need access to therapy just as much as others who are on the spectrum. Don't let anyone tell you otherwise.

It may feel that you are constantly on a never ending emotional rollercoaster. One moment you feel as though your heart is breaking when you see that your child is struggling to fit in with her peers, the next you are rejoicing and celebrating all the small victories. You're wanting to cry on the inside when you get wind of the fact that your child has been teased or rejected by other children and then when your child makes a friend who just seems to get her, you want to jump, celebrate and shout it from the rooftops. Then there is the despair of being in meltdown mode and the absolute emotional, physical and mental exhaustion in the aftermath of a meltdown. And finally there is that fierce Mamma bear mode that you seem to morph into so easily when it comes to protecting your child.

Why are you so welcome here?

My 7 year old daughter is on the Autism Spectrum, on the higher end and many of the difficulties that she faces on a daily basis are hidden. We have two provisional diagnosis' and are waiting on the third to confirm our suspicions. It has been a long hard road to get to this point.

You cannot look at O and visibly see her autism. She does not stand out, she has never stood out. O is able to hide her difficulties so that no one else can see. She is able to mask her traits so that they don’t stand out, so that she doesn’t stand out in the crowd.

O will power through her day using strategies that she has developed and learnt but then she collapses in a heap at home at the end of the day because it has become all too much to handle. At school she will look you in the eye and say that “everything is okay” or "I'm fine" but that doesn’t necessarily reflect how she is really feeling beneath the surface. If you could step inside her brain for a moment, even just a second, you would notice that O is like a duck, paddling furiously to stay afloat.

She will play with her friends but will confide in us later that she has no idea why they said the things that they said, or why they acted a particular way. O struggles to understand other people in social situations. Sometimes she understands social situations, others she has no idea how to take a step into a group. It is a big leap of faith if you’re unsure of how to interpret how others are acting. It’s then that she prefers her own company or the company of younger children.

O loves to achieve, she loves to learn. O is a perfectionist. When she does something, she does it well and if she thinks that she hasn’t done a good enough job, she will beat herself up about it.

This all comes at a cost to her own mental health. It is mentally exhausting for her. The thinking, the extreme concentration and effort, the guessing and double guessing. O has a huge heart, and this is sometimes taken for granted and used by others. And at times when she has simply had enough and can’t give anymore, she ends up in meltdown mode. O doesn’t mean to be rude, aggressive or nasty. It is all a means of communicating to us how she is feeling at that moment in time.

She doesn’t have it in her nature to be rude. O is loving and considerate and caring. She always has been.

Our job as a parent is to help our children to figure out what is going on and find ways to help them. Doctors and therapists will provide you with advice but it is up to you to lead the way, to work out what is best for your child.

You’ll need to step up the parent role a notch and become an advocate for your child. Your child's diagnosis means that you will have a better ability to advocate for their needs, you will be prepared with the information that you are given about your child.

Everyone has a opinion about Autism, even those who know very little about Autism. You will need to navigate through the maze of knowledge and weed out the advice that you think is useful from the information that is not. You need to store the advice that you think will be useful for your child in your message bank.

There are so many options. Perhaps you’ll use a select few, perhaps you’ll use a combination. You may try things that don’t work that you need to discard. And then you’ll find things that do work and you’ll think “why didn’t we do that in the first place?” It really is a game of trial and error.

No one is perfect, that’s one thing that I can guarantee, so don’t beat yourself up. Try your hardest. You might fail, but never give up. We're all fighters in this club!

There may be days when you want to give in and quit. But you can’t because you love your child and would do anything for them. You need to help provide them with the life skills so that they will succeed You will need to assist your child to understand who they are and that Autism makes them different but in a good way. You'll need to assist your child to embrace their differences.

You’ll no longer take things for granted, like hugs and smiles and words like “I love you.”

At times it can be lonely to have a child on the autism spectrum. But then you meet other parents at therapy sessions and you realise that you’re not alone! You’re part of a special group of parents who understand each other completely.

Continue to love your child with the fierce protective mother bear, or papa bear nature that you have developed.

Do not let people underestimate just how amazing your child can be. Our children have the most incredible talents and they have so much to offer. They just go about things differently. They will get there, they just have to pave their own way and make little detours along the way.

Community understanding and acceptance has improved a lot, but there is still as long way to go. You'll be one of the ones leading the way in educating those who know very little about High Functioning Autism.

Every step that our children take on this journey takes courage, practice, effort and perseverance. I know that O will find her place eventually.

Until then we, and you, will plod along at our own pace. Along the way we’ll aspire for acceptance and inclusion. But not perfection.

And I’ll be there with you, the entire journey. Welcome to the club!


  1. This is amazing! What a great resource and support for other parents. I don't know as much about autism as I should, and I look forward to learning more. Your daughter sounds like a very remarkable girl.

  2. This is lovely. I don't know the feeling of being in that situation, but you are a strong woman and an amazing mother.

  3. Such a great post. Thank you for sharing your story!

    Belle |

  4. O sounds like such a wonderful person! I really hadn't heard much about High Functioning Autism, and I didn't realize that Aspberger's was no longer a correct term. Thank you for bringing attention to this!

    1. O is a wonderful person, I feel very lucky to be her mum. And you are most welcome, people understand the term Aspergers better than High Fucntioning :) Makes it interesting. Autism Spectrum Disorder now encompasses ADHD, Sensory processing Disorder and whole bunch of other disorders.

  5. Great post. Much love to you, stay strong. <3

  6. Great post. Much love to you, stay strong!

  7. Such a wonderful uplifting article. Thanks for sharing with us.

  8. Such a great post and such a welcoming environment for parents figuring all this out.

  9. Such a great post and such a welcoming environment for parents figuring all this out.

  10. Wow! This is awesome! Thank you for being open about this, other moms need to know they are not alone!

    1. Thank you for your kind words, I felt that I needed to write this to help a few friends out!

  11. Interesting read . I really needed to read about this and learn more. Thank you so much for sharing your . Sending you and your family best wishwas to go from strength to strength

    1. Thank you for your kind words, I'm glad that you learnt something new.

  12. This is so wonderful and will be home to many parents needing love and support...and a understanding ear!


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