Living with the A Word

Ok, if you haven’t caught it there is a rather good drama on BBC, Tuesday at 9pm about a family who are coming to terms with their 5 year old, newly diagnosed autistic son. I wrote about it here last week, but I don’t really want to get into the habit of reporting back about the drama each week, go watch it if you’re interested.

What I would like to do is pick up points that the drama highlights and compare them to my experiences. Oh, now, if only the BBC were to make a drama out of my life!! Actually, strike that, you’d never believe half of it.

Wandering off.

Now, I have two kids on the spectrum and they have their similarities and their differences. One difference is wandering off, my eldest did it all the time, my youngest never has.
I remember the first time my eldest went off, he was nine years old and it was Boxing Day. He’d got upset over something and just walked out of his nan’s house. He was gone for hours, we called the police and were so worried. Then he just came back as if nothing had happened! He got into so much trouble for that, but it didn’t stop him from doing it again, and again, and again. He hadn’t been diagnosed at nine, we didn’t know he was autistic. We knew he was ‘different’ and the school had pressed for us to get him assessed. We ‘knew’ that there was nothing wrong with our child and he would grow out of it. Yes, we were ‘those’ kind of parents. Our lives were turned upside down when we finally did get a diagnosis. The wandering still continues some 18 years on. I still worry like hell when he does it, but I don’t chase after him anymore, drive around for hours looking for him. He’s not failed to come back yet.


When my eldest was diagnosed, what was the first thing I did? Took him out of school to home school him. I honestly believed that I could do a better job than the school that seemed to be failing him because he was upset every day and had no friends. He was bullied mercilessly because the school had put him in the ‘special needs’ classes. He was bright and clever, he just couldn’t communicate properly, but the school didn’t know how to deal with him.
I didn’t know how to deal with him. Home schooling went really bad and one day after a particular nasty incident, I decided that I couldn’t cope. By this time I’d split with his dad and was doing all this alone so we didn’t have the parental disagreement to deal with. It probably would have helped me to be fair, because alone I was very lost.
Eventually, he was found a place in a special school where he finished his education.
This doesn’t mean I have a problem with home schooling. I’d do it again in a shot if I could, I do think that schools can be really wrong for some children, or maybe some children can be really wrong for school.


My eldest is not a big music lover, especially not popular music. He does listen to classical sometimes. My younger daughter loves music and has her headphones on for hours. She’s not a musical savant, although she does have a real good singing voice. It’s such a shame she won’t join the choir at school. She did try, because her sister is a member, but it didn’t work out.
She also has the radio on in her bedroom all night long. I go in often to turn it off but it always gets turned back on again.


Autism and tantrums appear to go hand in hand. We tend to call them meltdowns rather than tantrums and with experience we learn to avoid them. To outsiders it looks like we are giving in to the child, but when you see the damage a full blown meltdown can do you know you have to pick your battles. Often it doesn’t matter how  much you try to make a child understand something, sometimes it just doesn’t sink in. 
Meltdowns can be scary and violent, or disruptive. Both my children have tried to harm themselves during a meltdown.
Autistic people have to deal with a lot of sensory input all the time. Sometimes it gets too much and they seek other ways of blocking out that input. It can often lead to meltdowns, where they completely lose control of themselves.
Everyone is different, but I’ve found with both my children that holding them firmly until they calm down. Often this can done from behind, but when they have been younger they have let me hold them to me. I can’t do this with my eldest anymore, but I have found that sometimes he will come to me to be held for reassurance.

The A Word touched on all of these things this week, but it’s really just the tip of the iceberg when dealing with Autism.

Often parents have to deal with other’s prejudices too and that’s why it’s important to raise awareness of autism. This week is Autism Awareness week, and April is Autism Awareness month. To find out more please visit the National Autistic Society and see what they are doing to raise awareness.

Sons, Sand & Sauvignon

This post is also a blog hop! If you have posted about autism then please drop your link in the linky below. To put the blog hop on your post please

get the InLinkz code


  1. April 2, 2016 / 7:06 am

    I've not seen any of this programme yet but it seems to be doing a great job of getting people talking about autism and helping to raise awareness. So interesting to read about your experience – and particularly the point about having to pick your battles with regards to meltdowns. From an outsider perspective it can be too easy to be judgemental without really understanding the situation – it will certainly make me think twice before making those snap (usually internal) judgements. Wandering must be quite worrying though even when you do learn to live with it.

  2. April 2, 2016 / 9:32 am

    Brilliant blog, will be sharing everywhere. Lots rings true for us too, but it's great to highlight that everyone is different and has different needs. Loving all the autism awareness 🙂

  3. April 5, 2016 / 7:29 am

    Great post, I saw little bits of each of my own 3 children in Joe last week all at different times. I think its imporatnt that people understand how vats the spectrum is and how different we all are 🙂

  4. April 8, 2016 / 7:51 am

    Thanks for sharing – particularly like how you've drawn the similarities and differences to your experience. I find myself getting irritated at the A-Word because of what the family are like! I feel sorry for Joe being bewildered in the midst of that!

  5. April 11, 2016 / 12:25 pm

    Really great post Anne. I really hope Hayden never starts to wander off for long periods of time. Ten minutes missing in Morrisons had me almost hyperventilating on Saturday. Thank you for linking up to #spectrumsunday I really hope you join me again this week. After a laptop malfunction (I spilt my wine) the linky will be live later today xx

Leave a Reply

Your email address will not be published. Required fields are marked *