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Our autism journey - part 3

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#1 EBeditor

Posted 20 January 2012 - 12:53 PM

In this series of articles, Essential Baby moderator Nicole tells the story of her son, Alex, who has been diagnosed with autism.

In part 1, Nicole gives a brief introduction to autism spectrum disorders.


In part 2, Nicole explains the symptoms which led her to seek an autism diagnosis for Alex:

part 3 now up:

#2 firstatforty

Posted 20 January 2012 - 08:26 PM

Could you also post this in the special needs section. I never look at this part of the forum and there would be other parents who are the same. Anything that can be done to increase awareness of ASD is great. Thanks to Nicole for doing this, it's not easy for some parents to talk about their child's diagnosis. I look forward to reading the rest of her story.

My son was diagnosed with autism just after he turned 3. I've had a lot of support and advice from the mums in the special needs section. If anyone has questions about Autism Spectrum Disorder please ask in the special needs section. You don't need a diagnosis to post there.

#3 baddmammajamma

Posted 20 January 2012 - 08:36 PM

Thank you for sharing this, Amber, and thanks to Nicole for being so open about her & her family's journey.

Like my friend firstatforty, I don't usually visit this section of EB. I am, however, pleased to see that Nicole's article (the link above) is the most viewed on EB right now.

ASD awareness is so important for many reasons.

First, ASD is now the most common set of developmental disorders in Australia. There are many EBers who have children on the spectrum (or are on the spectrum themselves). There are EBers whose children are at risk for ASD, but these parents might not know the red flags or what to do in the event that they have concerns. That's why you will see several ASD mums continue to post information and share experiences -- to help other families.

Second, and just as important, awareness helps pave the way for acceptance. There is still a lot of  misinformation out there on ASD. Hearing personal stories from families helps make ASD "real" and also serves to drive home how broad and varied the profiles on the spectrum can be.

I echo firstatforty's invitation -- if you have any questions about ASD or are concerned about your own child, please come join us on the Special Needs/Disabilities board. You don't have to have a diagnosis of anything to take part.

#4 EBeditor

Posted 26 January 2012 - 09:46 AM

Sure firstatforty. I will wait until al 3 articles are up.

#5 ~ky~

Posted 26 January 2012 - 10:39 PM

Wow ... I see so much of my son in how you describe Alex.

#6 mumma emm

Posted 29 January 2012 - 08:09 AM

i too have a child that has been diagnosed in june last year with Autism at age 3,  still am struggling to understand what, how and WHY. i have been givin info but it is all txt book cases and it has not helped me really???? need help

#7 kazzy71

Posted 29 January 2012 - 12:35 PM

QUOTE (mumma emm @ 29/01/2012, 09:09 AM) <{POST_SNAPBACK}>
i too have a child that has been diagnosed in june last year with Autism at age 3,  still am struggling to understand what, how and WHY. i have been givin info but it is all txt book cases and it has not helped me really???? need help

Hi Emm, how are u? I am also new 2 all this with Autism,my gran daughter has been diagnosed but we are waiting 4 her app to pick up her paper work,so we dont know yet how bad sad.gif  she is 2 years old,she is a lovely lille girl always happy... a real joy..but I know this may change..I look at her beautiful face and just wonder what is she thinking,does she know what is going on around her,will she ever?? maybe we can do this 2gether  biggrin.gif I was also a single mum,I know how hard it must be 4 you with so many kids,I hope 2 talk soon karen x

#8 Nut

Posted 29 January 2012 - 10:04 PM

Mumma emm - Unfortunately you will probably never get those answers. It's not something you or anyone else caused and no one really knows why. Just a lot of speculation. My approach is rather than concerning myself with the how and why of it is to try and focus on the 'what can I do'.

Having a diagnosis already is an awesome step toward finding what kind of help you need. Because every child is different and every child with Autism is different, their needs are different. The earlier you have it diagnosed the better and you've got that. It opens up so many doors help you can get. To funding and extra help at school.

It's an ever changing landscape for us. Things that DS did a few months ago that have changed now. Even some things I mentioned in my articles have changed.

My recommendation... Find a group of parents of children with Autism. It was through a couple of Facebook groups based in Canberra that I found my way through the actual diagnosis and I have now made some friends who understand what it's all about. People who know why I choose not to go to parks with my children or why I am hesitant to go to certain places for fear of something going wrong. Having friends who get it is probably the most important thing for me. Even if it's just someone to vent to!

If you ever want to chat via PM, feel free to contact me. I have known for a while that DS was on the spectrum, but it is a completely different ballgame when they start school and you have to consider the various therapies. And it can be a little hard at times, when I look at my daughter who is nearly two years younger and I see her doing things DS should really be doing and should have been doing at that age. And that I can even have a better conversation with her at only 2½. But I am lucky to have such a sweet, placid and wonderful little boy who is funny and loving. He just doesn't process things the same way most people do and that's OK.

#9 EBeditor

Posted 20 February 2012 - 03:01 PM

Bumping as we have released part 3  -the process of getting an offical diagnosis.

#10 pelimum2dj

Posted 20 February 2012 - 05:16 PM


I was interested to read that in the ACT you can get a disabled parking permit.  Can you tell me more about this.  I have two with autism, one severe and one moderate.  Now 9 & 10.  

It is a challenge, but a very rewarding one.  Good luck with your sons schooling.  Just be prepared to go to the department over the school if you think you are getting a raw deal.  I ended up changing schools because the original one required me going to the department for everything.  THe new school is so much better and more accommodating and the attitude has led to immense improvements.  My daughter (9) is just starting to be able to have a conversation, but is still unable to answer a question when asked.

For Emm, my recommendation is not to concefrn yourself with the why.  Be much more focused on how to live with the condition.  This is something that will give results.  

Enjoy the journey.

#11 baddmammajamma

Posted 20 February 2012 - 08:13 PM

Nicole, thanks for sharing so many phases of your journey. Like you, I felt more relief than anything when we received our daughter's diagnosis. It gave us some understanding of her unique wiring and sense of direction re how to best support her.

We are definitely an early intervention success story!

Best of luck to you & your beautiful little boy...and all the best to other families out there who are starting their own ASD journeys.

#12 Nut

Posted 21 February 2012 - 07:28 AM

pelimum2dj - Hi original.gif

Yes I have a disabled parking permit for my son. It's only a newer thing after some parents of children on the spectrum fought hard and won. It's definitely worth looking into.

For me I just had to print out the application form for the sticker and take it to my doctor. In this case it was my paed but a GP is enough. There is no box on the form but my paed ticked limited mobility and wrote a little blurb next to it. Other doctors write a brief explanation on the side or back of the form and sign it. It was handed to me over the counter when I went in to the motor registry. Luckily the lovely woman who served me also has a child with ASD and didn't question it as well.

As for school, so far we have been really lucky. He has a brilliant teacher whom he loves and is very proactive. He met Alex more than once before the year started and took time off last year to go to his 3yo preschool and just see what they do with him and how he is. And being a younger male teacher as well I think is a really positive thing for him. They put in the application early for an LSA who is there two days a week full time. He only goes two days one week and three the next so only one day per fortnight without the extra pair of hands.

There is another little boy in the class on the spectrum as well who is more severe than Alex and seems to get more aid from the LSA, but as long as she spends some time with him giving him the 1:1 he needs it doesn't phase me. I will talk to her this week and see how she is going with him anyway, just to see how she responds.

#13 Mum_of_five

Posted 02 June 2013 - 11:39 PM

This is the first time I have been in this forum.. Thankyou so much for sharing your story original.gif My 14 year old was diagnosed with Asperges in Feb this year and reading your story has been so inspiring.. I am now in the process of having my 13 year old assessed ASD..My boys were diagnosed with a language disorder at 3-4 years and I never questioned the diagnosis til my first went to secondary school and I began to question a few behaviours..I do regret not getting a second opinion when they were younger, and blame myself for that.. But it is also not uncommon to go undiagnosed til they reach puberty..

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