Monday 9 July 2012

Stop talking about Autism and start focusing on your own children



I belong to this forum which has some amazing members but some of the members are so obsessed with disproving their children are autistic (Im sure most are not autistic) and proving Autism is a massively over diagnosed disorder, they are taking the whole purpose away from the forum which is ment for parents to come and discuss therapies, schooling, family and friends and most importantly their children.

I don’t know if they are right or wrong about a epidemic and I really don’t give a shit two hoots

It clearly states when joining the forum that:
"This forum does not serve the needs of parents with Autism. And that discussing vaccinations, diets or sensory therapies will not be tolerated", and its not."

So when you are going through that evaluation phase at times it does not seem like the friendliest place to go and its been suggested by some members that if you are seeking that assessment you have a lot of other places to go which is all well and good but slightly unwelcoming. Peanut has all his assessments coming up next week/month and I really don't feel like I can talk about it to them without being shut down by some of the members( again Ill say most are really lovely and fine)"

When Peanut was 2.5 we went down the Autism route (I was pretty sure he was autistic had autism what ever you prefer to say)and were told it was unlikely by an early intervention team. So I joined this group and all the green flag vs red flag talk convinced me my son was not Autistic cause they, these other kids do that and they are fine but really their kids were not my kid and I was not looking at the big picture the whole spectrum that was Autism. Last year Sept we went on a holiday and peanut was withdrawn, anti social, playing with the bottom of the springs on the seesaws, waking up at 3 am and grinding his teeth we also noticed then that he does not like to turn back on himself (it’s a bit hard to explain) but basically if your going for a walk it better be a circle route or you will be walking  for a long time. Any way I didn’t feel I could talk to them about this I felt like  I waited to long to have him assessed properly for a second time I really did and that was my choice but I do think a lot of misguided information lead me to make that decision and wait as long as I did.  I think sometimes I get the impression people are scared to include a psych in the evaluation process but yet they go on about getting and accurate diagnoses, how can you if the a psych is not involved? Iv actually read posts from senior members  that have said "DONT NOT LET THE PSYCH DO ANY OF THE TESTING"! Why was I scared to get him assessed if I really didn't think he was autistic?  

Don’t get me wrong the majority of the members are amazing well education and they all want what’s best for their children and I have made some great friends from it. but whether my son is or isn’t diagnosed with Asd I don’t think it’s the place for me any more. 

Its great that parents have a place to do to talk about language disorders and delays (and there really are not enough places for this) So I guess my question is if its states "This forum does not serve the needs of parents with Autism" why all the Autism talk? recently it was spark by another member being banned (or as the forum moderators want to tell you she requested removal) after feeling the same way as I have expressed here. There was a pretty good discussion on the board about it but most people just did not get it, We are not bagging there judgement and we are not telling them their children are or could be autistic. We were just stating that from what you read from the forum you get a certain idea of what Autism is and how it looks and what flags are green and red, and some of these theories for instance being social and having an imagination. Its not one thing that makes your kid Autistic or not Autistic its a whole spectrum of signs. So please go out and meet kids with HFA or PDD-NOS meet their parents have a coffee and a chat.  1 or 2 things will happen  
1. you will say ohh well maybe I should look into this further or 2. oh good yep there is no way my child would get a diagnoses based on what I now know, and then you can all stop worrying. 

I would also like to thank all my family and friends who support me with all my indecision during this time of insanity LOL  xxx you guys are the BEST I know you all probably saw it long before me! 






2 comments:

  1. PLEASE NOTED I EDITED THIS TO TAKE OUT REAL NAMES

    Missy1 August 2012 17:59
    Hi Pomfrit, I know you won't post this comment (and that's totally, totally fine), I just wanted to convey this information to you. That member did in fact request removal. Her words exactly were:

    "I've been doing a lot of thinking the last couple of months and have decided to leave the board. "

    This statement, along with her blog post did lead us to removing her account.

    Thank you.


    Hi Missy, Why would I not post it? I am all for speaking your mind without feeling judged or as if you are stepping on toes( but you know that I guess). I did have to edit it so it removed real names for personal reasons.
    I heard from the member in question and I can only go by what she told me when I asked. I don't think it really matters anyway the fact that I was also removed after making this post says it all really. Its not the point of the post. Im not sure why this post was so offensive to you all as I have not once mention the name of the board or any of the members. I've actually had alot of members comment on how much they agree with this post even though they also love the forum.
    I had alot more to stay about it all and I really wish I had now. I know you don't want to hear it but there is alot of misinformation on the forum and after seeing numerous post discouraging parents from seeking a psych as part of the assessments is just one of the examples. I understand people have had bad experiences with psychs ( I know I have!) but in a whole they want what's best for all our kids and its not in their interest to misdiagnoses as they wouldn't be in business long. But hey thats just my opinion and this is what this blog is my opinion no one else's. We are not blaming anyone for anything just voicing our opinions. Im not sorry anyone is offended as it was not my intend to offend and I feel you have miss the whole point of this post.

    Thanks Missy and good luck in the future.

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