Living with Autism

Many parents of children with special educational needs run into some difficulty when it comes to toilet training. In fact it can be part of the diagnostic discussion with the public health nurse and a source of some shame and embarrassment when you are comparing your child to others.
The first thing to say is that the professionals ask about it as an indicator of developmental delay, not to judge and pressure you.



Remember, a lot of parents LIE about toilet training so do not beat up on yourself when comparing your child to “normal” kids..

Sure your kid might still be in pull-ups during the day, but their kids might still be wetting the bed or wearing a nappy at night (hell, they might still be wetting the bed themselves) Ignore them and choose your starting age for training according to your needs. You can spend 18 months trying to potty train for NO 1s and 2s or you could wait a year and get it done in 3 months when you are both ready.

You will know that your child is ready, when they …

For comprehensive advice on specific elimination diets you are going to have to look elsewhere.

This is just an overview of how the food issue comes up in the wonderful world of Autistic Spectrum Disorders and the word that I would apply to diet is LIMITED.

As I have mentioned elsewhere, autism can mean you are subjected to a range of sensory overloads and therefore seeking a consistency in your environment.

By being selective about eating a child can exercise a measure of control over the sensory bombardment that they are experiencing.

And just as important as taste and smell, is the feel and look of a food.

Many children decide they do not like foods of a certain colour with a determination which you can identify with; if you try to imagine eating blue soup. It’s just wrong!

Don’t expect them to find white or yellow or brown food any less wrong.

People with Autism often have an incredible palate as evidenced by the number of Auties I used to meet in the wine industry. (The wine industry of…

A is for Autism but also for anxiety, anger and acceptance – some of the emotions I’ve experienced over the last couple of years since we got the diagnosis of Autism for our son.

I’m at the acceptance stage for a while now Thank God, but I think the anger and anxiety are just something that has to be gone through.
(Not anger at my son obviously but anger that the world may set challenges for him that he’s not able for).
The acceptance for me is accepting that I have a child with special needs but I don’t put limitations on his abilities – how could I when he keeps surprising me all the time with how well he’s doing and more importantly how happy he is?
I suppose for us it might have been easier than for some parents as the diagnosis didn’t come as a very big shock – my boy was “in the system” since he was very small – speech delay, learning difficulty, global developmental delay (which is doctor speak for “there’s-something-wrong-with-your-kid-but-we-dunno-what-it-is” , I think)
We kne…

This is one of the toughest decisions a parent has to make. Let me tell you why I was faced with this.




My name is Joy, I am the mother of two girls with ASD, aged 11 and 13. The older one copes well, all things considered, but the younger has a much tougher time.

She was very violent toward me from the age of two and there was just no way behavioural therapy was getting through to her. Her mind was so confused – this was the only way she had of expressing herself. I don’t promote medication, but let’s face it, a time comes when it’s the only option left. My daughter is no longer violent toward me and she has learnt great coping skills. BUT-the only way she was able to do that was to be put on haloperidol at the age of 3. A very dangerous sedative. She was sedated for a whole year in order for us to put new behaviours into place, which would have been impossible had she not been medicated. I was very worried at first about putting my 3 year old daughter on such a dangerous drug which has…

To be honest, when I was asked to write a bit about my situation, that is; what it means to find out I had two kids with autism, I was flattered.
Then I did nothing about it for well, almost a year, finding other things to do. I did a lot of filing, direct debits to be cancelled etc, I even went to the dentist for the first time in 5 years, and then I realised I was putting it off.
Why? I don’t really want to revisit that awful time. It is true that the harder you work, the luckier you get. Well I work very bloody hard with my kids and things really do get better every day. So keep reading……
But to describe what it was like to find out that I had two children with severe autism;
To paraphrase Oscar Wilde; to have one child with ASD could be misfortune, to have two looks like carelessness!
The other thing is; I don’t know how the story ends…….

When people read books about a struggle with disability, they want to know that the person who wrote the book has affected something of a miracle cure…

ABA is not a therapy for Autism.
It is a behavioural science.
If a teacher with 30 pupils is using pairing and reinforcement to teach her class the national curriculum, then she is using ABA.
If a so-called aba tutor in an unrecognised so-called aba school is giving a young adult a task based on something that is; 1. not of any interest to them,
2. that does not take into account their previous skills level,
and 3. is not functionally valid, then that is not ABA.

It is not the classroom, or the age of the pupil or the tutor or even the curriculum that determines it, it is whether it is based on the foundations of behavioural science.

I was at the Red Door conference and I had an issue with the new buzzword of
"Person Centred Planning" that was coming up in some lectures.

Hang on while I put on my lycra body suit........






If the person that the planning is being centred around is assessed to determine their skills base, That is ABA. Power of "establish a base line"

If the plann…

Do we want our children to learn, or are we happy with them just being taught?

That is;
in a 6-1 setting which is the state ASD model, a curriculum will be taught to all 6.

There may be a couple of SNAs attached to the class whose role as "care assistants" is to "keep the children in their seats and take them to the toilet etc" (according to the DoES officer that I spoke to in November 2006)
In every class of 6 that I have observed, about 3 will cope with the setting. They will stay in the classroom for the main part, they will participate in group activities like circle time, answer questions, do a bit of independent art and craft and sit at their work stations at work time.

The other 3 will engage in perseverative behaviours, maybe self harm, run up and down the room (and out the door first chance they get) they will need to be held in their seats at circle time and will not participate independently in group activities.
They will effectively fail to progress to their …