‘I have autism’ versus ‘I am autistic’. Autism Awareness/Acceptance.

There is a current discussion about whether we should say someone has autism or is autistic. I have used both terms interchangeably.

As parents, we are advised to ask an autistic person about their autism before we make judgements about our own children. So, over this weekend, I did exactly that and consulted those people with autism closest to me.

I asked my boys which term they would prefer to use or be known by.  I also made it easier for them to understand by saying, if someone asks you why you have or had one to one support in school/college, what would you tell them? Would you say I am autistic or I have autism?

Benjamin (20) firstly said ‘I am Benjamin’. Then, ‘I am Benjamin and I am a musician’.  But if pushed to add a bit about autism, then, ‘I am Benjamin, I am a musician who has autism’.  He wants to be known as Benjamin. To him, he is not defined by his autism. He also said ‘maybe it’s why I learn music so fast’.

Thomas (20) said. ‘I was autistic when I was a young child, before I could talk . But I did ABA and now I only have a bit of autism so I am Thomas with a bit of autism’. He explained that some of the young people he is at college with are non verbal and have severe behaviours. To him, they are autistic. He himself has ‘a bit of autism’.  So, to Thomas, the word autistic means a more severe form of autism.

H (17) said he would try not to mention autism at all to people. He does not want to be reminded of it. It is not a label he wishes for himself. He also answered my question by saying they mean the same thing and it’s the way you say it that matters.

We don’t discuss autism much with Marcus (10). He, like his brothers had seven years of one to one teaching from ABA tutors who he loved. So, he does know he required help to learn to talk but as his brothers did too, he does not feel different in any way.  He said ‘before the tutors I was autistic but now I just have a little bit’.

I think my boys equate autism with not being able to talk. To them, that was their biggest hurdle and now that they can talk, autism is no longer an important word to them.

It is so much easier now that they are verbal and are starting to being able to explain how they feel about themselves and how the world appears to them.

They do not see injustice. They do not think they are not accepted. They are so accepted by everyone around them. They are loved by us of course but also by the many people who they have been involved with in their lives. Ex tutors, teachers and carers still come to visit them and to stay in touch.  The boys have not only changed their own lives but those around them.

I think the awareness/acceptance is also for us as parents. Managing the things the boys do not know about. The battles for their education, the tribunals fought to get funding for ABA, to get everything they need on their EHCPs, to find the right schools and colleges. To battle social services to get payments for carers to take them out, to choose those buddies with care so that they are friends for the boys and not just people who need a job. The constant organisation of their lives to ensure they are busy and fulfilling their dreams. This all happens behind the scenes for my boys but this is what people need greater awareness of. That, in order for my boys to lead happy lives, so much support and funding is needed.  We, the parents, are also battling prejudice on behalf of our boys.

I would like to think that one day, it may be my boys standing up to tell the world about autism and not me, their mother. I may have the ability to write but they have the gift of being able to tell the world how it really is.

dav

 

 

 

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A piece about Pizza

A love of pizza seems to be a very common theme in autism.  I think it’s probably a favourite for most children but for our children with varying sensory issues related to their autism, pizza seems to be one food which is well liked and tolerated.

For many, it seems to be a staple in their diets. This generation’s alternative to a cheese sandwich.

My twins never graduated to eating lumps in their baby food or eating solids. They would gag and spit out anything that was not finely pureed.  I was terrified they would choke so I pureed all their food until the age of three. They also had enormous tonsils which were constantly infected and met in the middle so swallowing was pretty uncomfortable.  Finally around their third birthday, they were still not talking and we received their diagnosis of childhood autism.

We realised that they needed to eat solid foods to exercise their oral muscles in readiness for all that talking we were desperate for them to start doing.  They began to eat bread, biscuits, pasta and pizza. All the beige foods. All the bland foods and those with no obvious lumps that needed chewing. They needed to eat a more varied diet as previously I had managed to ‘hide’ all sorts of healthy stuff in their purees.

Soon after diagnosis, along with starting a full time ABA (applied behaviour analysis) programme, we heard about gluten free diets which were helping some children who had gut problems or who were very food restricted like our boys. One of the theories was that they might be craving gluten so if we removed it, they might try other foods. It was worth a try. Gluten free pizza tasted like cardboard as did the bread. This was 17 years ago when the only gluten free foods you could get were mostly on prescription. No gluten free aisles in the supermarkets back then.  Thomas’ diet did not vary. He kept ploughing his way through cardboard pizza, bread and biscuits! After six months, there was no difference in the boys behaviour or food choices so we abandoned the gluten free diet.

We were rarely invited socially to other people’s houses but when we did, we always took pizza with us.  It was the best option. The boys would eat it. It would not inconvenience our hosts and it did not require any preparation or create a mess to wash up. But, it was always a plain cheese and tomato pizza.

I asked on my facebook page recently, what people were doing that day at 6pm. I was not surprised to read a few responses saying their children had eaten a cheese and tomato pizza for supper.

Gradually, over the years, the boys became adventurous with food and are now all really good eaters. Good, as in, they eat a full range of adult foods including lots of vegetables.

But they still love pizza. Fridays nights are pizza nights in our house. It’s the end of the school week. It’s great for me too. No cooking.

When they passed their English level 2 exam last week, we all went out for sourdough pizza with all the toppings.  No more plain cheese and tomato in this house. Sometimes, they cook with a buddy and make their own pizzas from scratch. It’s like a mini pizzeria as they offer topping choices to their brothers.

The photo is from a holiday in Turkey a few years ago when they boys had a pizza which was the full length of the table. You can just imagine their excitement as it arrived. It didn’t take long for them to demolish it all.

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The last kiss

There was a piece going around on Facebook a few months ago about loss. Along the lines of, cherish every moment with your children as the bedtime story you read tonight may be the last time you read to your child. The last kiss they allow you to give them as you drop them off to school. So many things that you never think will be the last time you do them until the moment has gone. Nothing sinister, a poignant post about growing up.

I read it and instead of feeling sad, I turned it around in my head.

As the boys have grown older and matured and progressed in ways we never believed they would, I spend a lot of my time reflecting these days. Often, we will be doing something just like a regular family would, having a picnic, going to the cinema. To those observing us or rather, these days, not observing us as there is nothing unusual to see,  we are a family out spending time together.

And then I remember. But I cannot put a date or a time to those ‘last’ moments.

I remember the last time any of the boys had a tantrum while we were out. The last time one of them undid their seat belt as we were driving along the motorway. The last time Marcus tripped over and scraped his knees due to his severe dyspraxia when he was young. The last time any of the boys ‘disappeared’ while on a walk. The last time any of the boys was frustrated by their inability to ask for something they wanted.

I don’t dwell on the past. But, sometimes, we will be somewhere familiar and I will get a flashback of how life was for us all when the boys were small.

I am grateful that my boys are so happy and so fulfilled now. To see them happy and not frustrated is the best gift we have been given. To see them able to make decisions for themselves. To be able to take them out for dinner and for them to love that experience. To be able to take them to the cinema and to the theatre and for them to engage and truly enjoy what they are seeing.

So my last moments now are not those we miss but those we are so glad to no longer have.

And I still get plenty of kisses and bedtime stories to read.

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Dangerous Giant Animals

Another night at the theatre. Another play about severe disability.

Christina Murdock not only wrote this one person play, but she acts in it (and sings divinely too). It’s about living with her sister so you really couldn’t get any closer to the truth than seeing her in it.  Her sister has a form of Rett syndrome which is often a differential diagnosis to autism as it shares many of the symptoms. Her sister has just single words to communicate with. She has multiple absences due to epilepsy, she has a terrible temper and she loves watching dangerous giant animals like lions and sharks on the TV, particularly when they kill people.

You felt the presence of Kayla, her sister throughout. At times, she interacted with her so directly, talking to her, looking at her, that you felt she was there on the stage with her.

There were some echoing themes. As in the All in a Row play, the disintegration of her parent’s marriage unravelled as Kayla and her sisters grew older. Finally, when she was grown up, they had to make the decision for her to leave home and move to a residential house with carers. As they left her there, she was signing and calling ‘home’ ‘home’. You could feel the family’s collective grief.

It is a decision which many have to make. What do we do when our children grow old and we can no longer physically manage them? What do we do when we get too old to look after them? Don’t they also need to leave home and live semi independently like we all have done? Sharing a flat, no longer children but adults.

Claire felt responsible for her sister. She learned at a young age how to amuse her, what made her happy, that she must never fight back. One awful night, it all gets too much. her father has left them, her mother cannot cope and Kayla is attacking Claire physically. Finally she retaliates and kicks back at her. The guilt she feels is overwhelming. She has hurt her sister. But siblings do fight in a ‘normal’ family, just not in her family, she has never been able to fight back.

There is an overwhelming sense of loss that she can never apologise to her sister because her sister does not have the communications skills to understand what she wants to say.

‘Maybe that’s why I’ve done all this. To connect with you in the only way I know how.’

She talks about the positive things Kayla has taught her as a person. There are light hearted moments too as she recounts events when they were children growing up. You know Christina’s life has been impacted hugely by a lifetime of caring and loving her sister.

It is an insight into the dynamics of a family that we have not experienced. When my boys were very limited verbally, their brothers were too. They didn’t understand each other, they were alone in their own world. I desperately wanted a neuro typical sibling for them.  Someone to love them unconditionally like I do, who would be there for them in the future when I am no longer here.

I know so many families whose children with severe disabilities have siblings who love and understand them. Those bonds are so powerful, like this play.

It’s on at the vaults this week, until the 10th March.  I was so pleased to be able to chat with Christina after the play, the love she emanates for her sister is tangible.

mde