Monday, 17 June 2013

What's in a Slogan?

Since the launch of our T-shirts online, AuKids has come to the attention of a wider autism community. In certain quarters, our upbeat take on the condition of autism has attracted criticism. Although only one person was forthright enough to share her views on this with us, we’ve no doubt that she represents a number of people who feel the same.

Their view would be that positive slogans on T-shirts such as ours are misleading, and that we have little idea of how hard autism is, what a struggle it can be for both individuals and their parents. They think that by adopting positive slogans, even funny ones, we make light of it and skew the public’s view of a condition that can have a devastating impact on a child and their family.

Those people feel that autism is a disease – have even compared it to cancer. They wish it to be eradicated to prevent further misery to millions and they feel that ‘celebrating’ it is tasteless and offensive. I’ve no doubt that they also think we’re in denial and out of touch. Maybe they feel that we’ve not had enough direct experience of autism.

There is nothing flippant about our decision to be positive and funny. It’s calculated.

What we know from history is that no one can learn tolerance and understanding in a climate of fear.
We are inviting people who we come into contact with on a daily basis to engage and accept autism. Then perhaps they will get to know the true individual better – and better understand the condition.

We don’t want them to feel that autism’s frightening. People refuse to accept something they’re frightened of and that’s what keeps them from learning tolerance. Segregation and isolation comes from fear – we’ve seen it with homophobia and racism and the same applies to disability.

Autistic individuals can have challenging behaviour, of course, no one’s denying it. That behaviour only becomes more challenging when others can’t understand the reason for it. The starting point is always to see the person and not the label ‘autism’ and to try and understand what it might be that they’re experiencing.

Every slogan we have made carries an underlying message. We know that people learn through humour, that’s why AuKids is often amusing to read. We also know that people who can laugh in the face of adversity are those who survive it.

So, what's the thinking behind our slogans? 

‘God created autism to offset the excessive number of boring people’ – this encourages people to value difference and positively promote it, not simply to tolerate it, an ethos laid out in the Equality Act 2010.

‘I was born with autism, the cheeky smile is all my own work’ – firstly this tells people that it’s a condition you’re born with. Secondly, it tells them that the individual with autism is much more than just the autism itself, and encourages people to see that a child with autism is still just a cute, cheeky little child.

‘I’m not difficult, I’m exotic’ – This is because our name AuKids, sounds like the plant orchid. Any long time fan of the magazine will know that the reason we called AuKids by that name is because like orchids, autistic children can be considered hard to manage. Actually, if you give them the right environment and you understand the conditions they need in order to develop, they can thrive.

‘Stand aside: I have the special powers of autism’  - this isn’t to be worn only by child geniuses!  The message is that everyone with autism is special in their own way and that autism is simply a different way of being wired up. Most of our kids are unique in the sense that they may be good visual thinkers or have other powerful skills, even if they are lacking in others. We’re encouraging people to take an overview of the whole of autism, not just its downside.

‘Autism: If it’s good enough for Einstein, it’s good enough for me’. Those who seek to cure autism are perhaps failing to recognise that many key figures in history were on the autism spectrum. Genetically, autism is so complex that you can’t simply pick and choose which bits to eradicate. Maybe one day we will be able to. For now, we’d rather not throw the baby out with the bath water.

So, we may look like we’re being flippant but as most of our readers will already know, there are strong beliefs behind these T-shirts.

We live and work with autism at its most challenging, but it’s only by being positive together – and encouraging others to do the same – that we’ll be able to live in a fully inclusive society.

Thursday, 13 June 2013

Been There, Got the T-shirt

I used to hate going to ‘normal’ toddler groups where everyone was comparing how many words little-un had (none) and how many waves they’d given to mum (none). Even before the autism diagnosis, I shuddered at this point-scoring style of parenting. 

Then I discovered the welcome oasis of special needs toddler groups. Here you wouldn’t be judged and you wouldn’t be asked. You were just accepted. The atmosphere was easy-going, the parents less uptight. What I received weren’t frowns of judgement (as Alec and Bobby sat spinning plastic plates in unison) but smiles of familiarity and understanding. 

The fact that people were tactful enough to avoid asking about our diagnosis became a bit of a problem in itself, though.  I wanted to swap advice, but I couldn’t just walk up to anyone and say: ‘What’s yours got? Mine have autism!’ That’s the sort of thing that Bobby would say. We were in a special needs setting, but it would still sound a bit of a nerve.

As I was new to the whole special needs thing, what may have passed me by was the fact that you would have struggled to guess that Bobby and Alec were autistic about as much as you would struggle to spot that Elton John wears a wig. 

Bobby was flapping and humming, Alec was spinning anything he could lay his hands on. Hindsight is a marvellous thing.

Even in the early days, I felt that Bob and Al were much more than just a label. But I felt that my twins could have done with a T-shirt, even so; some sort of shorthand so I could cut to the chase. I didn’t want to label them with a Government health warning. I had no intention of buying a T-shirt that provided members of the public with an apology or a defence. I didn’t like the T-shirts that insulted people’s intelligence and sensitivity by assuming they were jumping to the wrong conclusions, either. Stuff that.

No, what we really needed were slogans with a bit of humour. Something that would do the job of communicating about the autism, but at the same time show that my kids were content to be who they were, we weren’t victims and that mum didn’t have a chip on her shoulder.

Five years on, and this little dream has been realised with AuKids’ new line of T-shirts, produced by Fins Design and Print. You can see the designs at and they'll be ready to buy shortly - keep checking!

Don't worry mums, we've checked and they're washable at 40 degrees, plus designed to last.

If I could have waved a wand in those days, they would have appeared. Being the co-editor of a magazine has its advantages in the wand-waving department. It means I can wave one on behalf of you guys, too! That makes me very happy.

We hope you love them nearly as much as the little person who will be modelling them. And please send us your photos when they start to wear them!

Wednesday, 12 June 2013

Where There's A Will...The Blog. Part 2

So, we sat down with our solicitor and she made a note of our main assets, namely the house. The next decision concerned the executors of our will. Firstly, she noted who it would be if only one of us hung up our clogs (each other) and then she noted who it would be in the event of both of our deaths.

We decided on a duo to be executors - Gavin's sister and my brother, so that each would be able to dish out what was due to both sides of the family without too much fuss and dealing with people that they didn't know very well.

So that was the easy bit. All she needed was their full names and addresses.

The next decision was on guardians. Having thought about it a bit, we had become aware that there was no perfect answer to this one, other than not dying in the first place. I think if you're going to do a will, this is something that you probably have to accept.

We decided on a member of the family whose own children were getting older, whose kids love the twins and who is also very good with them, Gav's sister.

The important thing to note here is that should she and hubby become an unsuitable choice for any reason, the courts can still rule against them looking after them, if they feel it is in the children's best interest. So you needn't worry about what happens in the future, as long as it seems a sound judgement now. And you can always change the contents of a will, anyway.

What is comforting is that we are also going to be writing a letter of wishes. This will make life easier for both the executors and the guardians. We will note what we have in mind for the boys as they grow up, the hobbies and talents that we'd like them to pursue, and what sort of living we envisage for them. For example, we'd prefer Alec to be in shared accommodation with a support worker rather than in a residential home or in the family home. Personal choices like this can be noted on the letter of wishes and would no doubt prove invaluable to a guardian.

I'm sure you're the same as us, in that there are a number of people involved with looking after your child who understand them very well on a daily basis. They may be unsuitable as guardians, but that doesn't mean that they need to be left out of a will entirely. You can note in the letter of wishes the people you'd like to have influence over your child's upbringing.

For instance, Bobby's teaching assistant M'lanie knows him almost as well as I do, and Tori of course is very familiar with him as well as being an autism expert. I would not expect my sis-in-law to cope without their help. In reality, they'd dive in to support her anyway, but it's nice to note in the letter of wishes that they are trusted and 'sing from the same songsheet'.

We set up a trust as part of our will, deciding that in the event of our deaths, Bobby would obtain his inheritance at the age of 18, providing he's ok with money, and that Alec's share would be looked after by a trustee.

We actually chose two trustees, the same people as the executors, for ease. The letter of wishes that goes alongside the will is to make it clear how we feel the money should be spent, to minimise disagreements.

This was noted in draft form by the solicitor. After we returned home, we contacted the people who we'd pencilled in and asked them if it was ok. Thankfully they all said yes. Bear in mind that the trustees and executors will probably never be called upon. If we live till a ripe old age, it will be the next generation who become the executors and if we survive until Alec and Bobby are 18, the trust will not be necessary. So they know that there is a slim chance of any of this happening.

We confirmed all this to GORVINS, who set about constructing the will and trust based on our decisions. We are now at the stage of reviewing the paperwork and the onus is on us to complete it with our wishes for any personal belongings in particular - for instance jewellery that we have earmarked for a relative or friend - and of course to write that letter of wishes.

I've started the letter of wishes and it's a good feeling to set down in paper the thoughts that are in my head about my sons' futures. All the same, it's a bit depressing to imagine myself playing harps, and I'd recommend you go about it only when you're in the best of moods, preferably with your partner present!


MENCAP holds seminars especially for parents of kids with disabilities.

A specialist local legal professional will talk at the events about how best to leave money behind to someone with a learning disability. The events are free and are a great opportunity for families and carers to get straightforward, face-to-face advice.

Tuesday 25th June, 6.30pm – 8.30pm
Harefield Manor Hotel, 33 Main Road, Romford, Essex, RM1 3DL

Wednesday 26th June, 12.30pm – 2.30pm
The Vestry Hall, The Vestry House, 21 Paradise Road, Richmond, TW9 1SA

Tuesday 2nd July, 12.30pm – 2.30pm
Mencap National Centre, 123 Golden Lane, London, EC1Y 0RT

To book your place at any of the events please use our online booking form:

Mencap has planned other wills and trusts events across the country - take a look at the website to find one near you.

Please feel free to contact the Wills and Trusts team with any questions you might have, or to book a place on 020 7696 6925 or 

Fimbles, Wombles and Other Creatures of Habit...

You probably thought that 50,000 episodes of Thomas the Tank Engine was about as bad as it got. If you’ve trodden the path where I’ve been, you may well be at that ‘numb’ stage with the Numberjacks. This is when your brain makes a brave attempt at survival by actually blocking out the background noise entirely, so that you can’t even hear it any more. 

It became rather obvious to me that this was how I’d maintained sanity for nine years when Alec was waiting to see the paediatrician for his annual check-up. 

Beforehand in the waiting room, he had taken quite a liking to a Disney mirror that told him he was a beautiful princess. He pressed it more than a dozen times and put it up to his ear. By the second dozen, this was floating nicely over my head until I suddenly realised that it could be driving the other parents to distraction. I removed it from him and replaced it with something else (Alec is remarkably easy going in this respect) and there was a palpable collective sigh of relief.

Alec is back into The Fimbles at the moment. We’ve got beyond the ironic joke stage with this and I’m harbouring ever more murderous thoughts about Fimbo as time goes on. I'm even starting to hope that he chokes on a Crumble Cracker, which is uncharacteristically voilent. I can see that the technicolour magic of The Fimbles is what appeals to Alec, but the phrase 'everything in moderation' doesn't seem to apply to autistic kids. Their ethos is more 'everything to the Nth degree and then some'.

Meanwhile, Bobby’s tastes are changing in line with his peers. The stuff that entertains him is even more  annoying than The Fimbles. He feels a frightening connection with The Annoying Orange, a Cartoon Network programme. We don’t have the Cartoon Network, but Bobby has hunted down the most irritating programme on it anyway. He follows its website instead.

The Annoying Orange has a sick fixation with other fruit meeting their untimely end in a blender. It’s murder, but it’s fruit. Should I be okay with this? I'm not sure. I've never wished death on a strawberry. 

Calling the Annoying Orange ‘annoying’ doesn’t even come close. Bobby loves to repeat all the Annoying Orange’s ‘jokes’ plus its maddening cackle. Although this is a form of echolalia, repeated purely for his own pleasure, we are still expected to provide the correct social response by finding it hilarious. If I don’t, he taps me on the arm and does it again. I have tried to explain that the Annoying Orange really isn't my 'cup of tea', but of course all the food metaphors start to get a bit confusing.

Between The Fimbles and The Annoying Orange life can be a little stressful. Even Thomas the Tank Engine, with his frankly predictable storylines (that's the point) concerning pride coming before a fall, has lost his gleam.

Thank goodness then, for The Wombles, Morph, Paddington and The Clangers, where I can harp back to my youth and the days when kids' programmes were made with adults in mind. It doesn't matter how old I get, I'll never tire of the Soup Dragon.