#Autism – Guilt, Recognition and Acceptance!

Published October 7, 2012 by mandzmagee

I recently joined up to a UK based website about parenting which I am really enjoying being a member of, http://www.wrigglyrascals.com.  It’s mostly geared up to pregnant and new parents however I found myself wanting to join up to share my experiences, thoughts and advice with other parents and parents to be.  Don’t get me wrong, I’m not in the slightest claiming to be an expert at anything, some of the pages are very thought provoking and I’ve found I can share my experiences on the site to try and help other people.  I found a couple of active questions about children with developmental issues which inspired me to write about this.  Have a look at the site and if you feel you can contribute to it do so!!

Before Theo was diagnosed it was very very clear that something wasn’t right.  He was late at hitting all of his developmental stages that a “Normal” baby and toddler should be hitting.  As he was growing up he developed what other people seen as unnatural obsessions and when people were passing comments I started getting very concerned and went to the GP to raise both other peoples concerns and my own.

We got Theo’s diagnosis at the age of 2 and a half, we were very lucky to have got his diagnosis so quickly, I know many a family that have struggled for years to achieve a “label”.  The fact of the matter is however – without the “label” there’s no support and nothing for you to research to try and help your child!

I found myself being isolated because of Theo’s behaviour, family, friends and onlookers comments, facial expressions and body language made me want to hide him away from all these people who were judging both his behaviour and my parenting skills.

I questioned everything I’d done for my son, had I caused him to be like this?  Was there something I’d done/ate/said during his pregnancy that had impacted on this little being that I hadn’t realised at the time? The guilt I put myself through thinking that I’d caused this was unreal, then came his diagnosis and I invested all my (rather limited) spare time into researching what Autism was.

You have no idea how that little label “Classic Childhood Autism” gave such a sense of relief the more I researched it.  My first hurdle out of the way and conquered!  It wasn’t my fault, according to statistics I’d found autism effected 1/88 people – so why weren’t people more informed about it?  Why was there so many other parents and carers going through the same guilt process as I was?

I joined forum after forum online and spoke to so many other families that had been through similar and it was such a relief to know I wasn’t the only one to have gone through it.

I still found myself protecting both Theo, Ali and myself away from other peoples judgements.  I knew in my head that nothing had been caused by myself, I knew that Theo wasn’t badly behaved but I also knew that other people didn’t see what we were now aware of.  I also wasn’t as confident or out spoken at the time to correct other peoples judgement.  We went walks on paths that Theo wouldn’t come into contact with people who would look at him strangely, where they couldn’t sit and mumble to their friends about how spoilt he was to be throwing a tantrum like that to get his own way.  How he only self harmed to get his own way.

My turning point was a time (post diagnosis) where family and friends had took the boys and I to a local (supposedly) family orientated fast food chain – an alien situation to Theo because I didn’t risk him facing the criticism of others  – where naturally it was out of routine so he thought he’d voice his dislike and discomfort.  Theo was nonverbal so it wasn’t in words – by jeebus that boy could (and still can) scream!  After placing our order and requesting a drink for Theo asap to stop his screaming (sucking was a calming technique) the manageress came over and told us that if we couldn’t stop “The child wailing” we would have to leave the premises.  All of a sudden I found my voice and well she was given the whole “what gives you the right to discriminate against a child with a disability, couldn’t you have asked to help and got the drink we’d already requested to calm him with instead of trying to make us feel uncomfortable and unwelcome?  Within a week I had the company’s area manager in a meeting with me about discrimination towards disability and found myself insisting on discrimination training along with customer services with feedback from the facilitator so that I knew that it’d actually took place (which surprisingly I received!).

I’ve never looked back!

Being in the local Tesco’s getting things for tea and Theo having a melt down at the till (Theo was still self harming at this point), the older lady in the queue behind me snidely passed comments loudly to the lady that was with her drawing attention to everyone around us – again I couldn’t help myself “My dear you do realise that your discriminating against a child who is disabled?  He’s Autistic you see, he doesn’t have social skills or an understanding that this behaviour is frowned upon by people that are supposed to set an example to the younger generations that respect is a two way thing.  I would like to thank you for your comments given in a horrifying tone to a 5 year old also the animated faces that go along with that disgust which will probably horrify him for days to come.  He may have disrupted your perfect little life for a couple of minutes in the supermarket however you’ve disrupted his daily life through your actions probably for the next week or so.  Thanks again!”.  Applaud was given by the onlookers and they all passed judgement towards the cantankerous busybody that didn’t know what to say in reply.

Now a days however I have to say – I’m a lot more reserved.  When I see people looking at Theo in disgust or talking to someone about what they’re witnessing, I simply point out how he’s got a hidden disability and how they should educated themselves about Autism.  “Just Google autism and you’ll see” is a favourite line.

I no longer feel isolated, I no longer shy Theo away from situations, I strongly believe that knowledge is power and I use my power to inform people and spread Autism Awareness (without biting peoples heads off n spitting them back!).

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7 comments on “#Autism – Guilt, Recognition and Acceptance!

  • Only just read this post and it sounds just like the time I’ve had with my little man. Jack still is yet to be diagnosed and I go through stages of guilt etc. but I’m getting thicker skinned by the day especially with the starers! It’s got so bad now Js been on a waiting list for assessment for 19 months and I’ve been told I’m one of the lucky ones as now people have to wait 3 years for a diagnosis! I’ve now booked a private assessment costing 2k just so I can sleep at night. He’ll be assessed on 26th October, I had to do it so I get enough hours for his statement as I’ve heard if the box is not ticked he’ll only get 14 hours one to one care and that terrifies me! I got sent on a more than words course and met a couple of lovely mums and we meet about once a month just for a chat and that helps to speak to like minded folk going through similar things. Anyway enough moaning and a great post so thanks for sharing :)) xxx

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    • Thanks so much for sharing your experience! I’m so sorry you’re having to go through the private ropes to get somewhere with J’s diagnosis. You’re also entirely right, if the right box isn’t ticked the support they receive is limited!! Get in touch with the team of Educational Psychologists from your area, explain to them that you’re stuck behind a rock and a hard place and you’re needing support – If they can’t help themselves they’ll signpost you to somewhere that will be able to offer support through everything and make sure that J receives everything he’s needing!!

      If you’ve ever any questions or just want a chat get in touch – I’m always genuinely terrified that other people haven’t got people to talk too like I was, if I can be a friendly font I’ll be one!! Xx

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      • Oh thank you, I never knew there was a group of educational psychologists available for help in my area, lol! Will check that out thanks.

        Don’t really know anything at the minute just learning every day as we go along… Every day is different with Jack today he had a meltdown because he’d knackered his Postman Pat DVD bless him.

        I’ve never dared ask for help because I feel that I need an expert to tell me he’s autistic just for piece of mind really?! Fingers crossed I can finally sort this by end of the month! Xx

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  • You have absolutely nothing to thank me for sweetheart – all us autism families are in it together to share, learn, celebrate, laugh and cry together!! Every child is different but hints and tips can be found through other peoples experiences!!

    I gave up on DVD’s Theo has a video player in his room and I scoured charity shops to find as many Postman Pat, Thomas the Tank Engine, Bob the Builder, etc video’s I could find. Theo has a terrible habit of scraping dvd’s and CD’s and having the melt downs when they’re not playing – The video’s seem to have been the answer with him thankfully!! I post up on the local freecycle website just on the off chance that someone’s having a clear out and needing new deserving homes!!

    You’ll learn with the “labeling” process (I call it that because without that specific word you’ve nothing) that you need to make your voice heard. Even when you have your diagnosis you’ll still have to push and make your voice heard to get the supports into place that you’re needing somewhere along the way. Every agency that supports young people with disabilities are too tied up in red tape over funding these days – They’re never ever as skint as they make out however! Having worked with young people on a voluntary and professional level I know all about the ins and outs of the funding system and I know for a fact if the agency themselves can’t fund it there’s always external funding opportunities to approach with their backing! Again – letters, funding applications, benefit applications, complaints so on and so forth I’m more than willing to offer help with because they’re a bloody nightmare to do alone!!

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