United we stand…divided we fall

By | March 7, 2012

I’m having a down day today, partly it’s the weather (I got soaked on the school run, drowned rat is not the word), partly it’s because I’m tired, partly it’s because I’m still on Lent (day 15) but mostly it’s this:

The shopping centre manager STILL hasn’t come back to me. Not even an email saying “no” or a returned phone call. Just agreeing to display the leaflets would help. I’ve got a reporter phoning me today from a local newspaper who has agreed that 2nd April would be an ideal time to run something, whether it’s an article or a blog extract. Someone else is going to give me a contact in Radio Berkshire – so I should be feeling positive, right?

And it’s more this, if I’m being honest:
I had a reply on twitter last night from a new follow (remember the fact that they followed me first, so obviously had a read a little bit of blog etc) and it said
“my two sons are teens….I don’t need awareness….”.
When someone new follows, I go back to them, thank them, follow back (after checking through their tweets) and then reference my blog. It is then up to the new follow if they choose to read/RT/comment. I don’t force the matter.

This has felt like “I’m dismissing you and your blog because a) you have a daughter on the spectrum, b) she’s 7 and c) you can’t help me”. Because this “dismissal” came from another autism parent, it’s hurt more than some random troll calling my child “r**tards” – I’m not spelling that word, I HATE it.

She was also after adult transition services info so I RTd her message and I saw afterwards that she was tweeting with another follower, so I’ve helped put two (or more people) together with that RT.

Like I said in my “penny for your thoughts” post, I am so grateful for the support and information you can find within the autism community here on Twitter, amongst the people who follow me and I follow back, there are:

Mums with toddlers newly diagnosed or waiting for a diagnosis
Mums who already have a child on the spectrum and are either pregnant with another child and wondering how they will cope – or wanting another child
Parents whose children start “big” school (primary or first grade) in the autumn
Parents whose children CAN’T not WON’T attend school – due to anxieties and lack of support
Parents of teenagers and young adults
Autism parents who are parents themselves (that is something I always wonder, will D form a relationship)
Individuals who are on the Spectrum and blog about their experiences and how they view things – so insightful, so useful
People who work with autistic children and young adults
Individuals and companies who genuinely want to help raise awareness.

If I haven’t name-checked your particular circumstance, please don’t take offence 😃

What I’m trying to get across is, this community is SO useful, gaining and sharing information, bouncing ideas off each other, sharing a joke, empathising with an experience.

There is so much negativity and worry around at the moment: the savage cuts the Government are enforcing; the statementing process proposed overhaul; the potential removal of Aspergers as a diagnosis if DMS5 goes through and the general indifference and lack of awareness out there – after all, as we know you can’t see, smell, hear or touch autism.

So..I think it’s helped writing this down, still feel like having a damn good cry though.

Comments/RTs as ever welcomed and I hope you’re having a better day J 😘😘

Facebook Comments


Tracy on 7th March 2012 at 11:33 am.

I’m very grateful for blogs , I’m still learning the ins/outs of our Autism world and as you have more experience your knowledge Is very welcome to me, to learn and apply to my sons needs x


Leigh Forbes (@spectrum_life) on 7th March 2012 at 11:51 am.

I am sorry the new-follower response brought you down. If he/she doesn’t need awareness, then fine, but that shouldn’t invalidate the contribution you offer the rest of us. Besides, my son is 9, but that doesn’t mean I can’t learn anything from you and your gorgeous 7yo. I’m interested. It all helps me learn about autism: the whole deal – not just my own brand of autism. And that knowledge puts me in a better place for raising awareness in general. So, thank you.


Deb at aspie in the family on 7th March 2012 at 12:06 pm.

Sorry to hear you’re having a down day. I’m afraid there is a lot of division within the autism community. I came across it the other day and it made me feel very low – I wrote about it here – http://www.aspieinthefamily.com/2012/02/tired-of-the-divide/ Sorry to promote my post but you may want to take a read. I hope you soon pick up – you have a lot to offer as does everyone else. Without all our individual contributions there would be no autism community and knowledge would be very limited. Deb xx


sarah on 7th March 2012 at 12:44 pm.

I joined twitter for this reason to find a community that understood & goes through what my family goes through & i have found this, i enjoy reading yours & others blogs, as you say some make you laugh others cry but it reminds me i’m not alone.
I asked a question the other week & another ASD parent replyed, it hurt a little what they’d put as its something alot of others also think who haven’t a clue about autism. But apart from this, this community has give me more confidence as i realise i’m not alone.


Ann on 7th March 2012 at 4:47 pm.

I’m fighting to get my teenage son and my nearly teenage son (12) a diagnosis of what I’m not sure but I relate so much to many of your posts. I also work with many families who identify with your situation. You are doing a fantastic job of helping more people than you can actually imagine – people who find life hard because the world at large is ignorant to their struggles and daily battles. I didn’t really ‘get’ twitter when i joined – people like you have changed my view and i have learnt so much and feel such a part of a community. I have finally found people that totally understand and more importantly empathise. Awareness is needed by everyone and those who choose to turn it down will be poorer for it!
Chin up and keep blogging 🙂


wendy on 7th March 2012 at 9:59 pm.

I’m sorry you had this like Deb said there is a lot negativity about at the minute with one thing and another. You get people like this but please don’t let them stop you blogging, we all learn from each other. I know I learn different techniques of handling situations talking to other people or reading their blogs


Ragga on 7th March 2012 at 11:41 pm.

Oh dear, I understand your feelings so well. I had one of those days yesterday. I was so glad when that day was over and woke up to a blue sky and sunlight this morning. Please don’t let other people’s negativity or ignorance drag you down, I can promise you that your blog is too widely read and respected to have one person convince you that it’s not a great thing that you’re doing here. And FYI, although I just recently started following you and daring to comment, I’ve actually been reading for a while now.

So… keep on the good work!

All my positive thoughts to you,


bluecrisps on 12th March 2012 at 6:30 pm.

Thank you so much Ann, for replying and saying that, really appreciate it x


Tracy on 28th March 2012 at 1:29 pm.

Don’t allow that one person to upset you ignorance is not worth your tears. Your doing an awesome job with raising awareness, my son is only 3 and I find all the blogs useful and comforts me in knowing I am not alone in this Autism world xx


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