ABA show on BBC Four gets me thinking of where we're at with Emily

Having started the slow road to researching ABA and VB, it was happenstance that there was a show on BBC Four the other night about ABA.

It seemed to really dig into the more unsavory aspects of the treatment and there was actually an American woman from a Uni in Sheffield that said ABA can strip away all the behaviours that make an autistic person unique. 

This person CANNOT have lived with an autistic person. While there's a lot about Emily I love, there are some of her behaviours that are just downright annoying. The hands on the ears, the spinning, singing, jumping around - these are fine. It's the incessant random noise generation and constant lack of attention that are annoying regardless of condition.

Sometimes, I do feel we are living in the dark ages, and watching this show really brought it home. Are we living through an epidemic that needs to fought tooth and nail, or are Autistic people the natural evolution of our species - one that we're ignorantly trying to repress and stay normal, according to our pre-evolved standards of what normality means. 

I'm constantly reminded of the scene in Star Trek IV where modern doctors are about the hack Chekov's head open to try and save him and Bones simply tells them to put away their butcher knifes and let him save them. I can't help but think that in years to come historians could potentially point to this point in the past as the tipping point where we tried to suppress something we don't understand. 

I'm still of the belief that we need to at least curtail the most outrageous behaviours in an attempt to bring a certain level of normalcy (or at least suppress Emily's lack of attention and focus) because whether we like it or not - we live in a society that has a certain level of normalcy that we need to adhere to - we can't just poop in the street or knife whoever we want. Likewise, a food fight in a fancy restaurant really isn't tolerated. 

Disease, affliction or evolution?

I was watching the trailer for the forthcoming X-Men film Days of Future Past and a strange notion hit me - as mutants in the Marvel universe are the evolutionary future of humanity, could autism be the evolutionary future of real life humanity?


It's of course a rather crack pot assumption on the surface. However, I started doing some research on Google and there's quite a few posts, articles and blogs about the subject. The usual suspects are trotted out as evidence that humanity has benefited from autism - whether it's evolutionary or a life long affliction. Names like Einstein, Newton, Gates, etc. - the ones who pushed human knowledge further than their counterparts and aided our evolution to where we are now.

Personally, I think the concept is a crock, but it does make for a good research session on the internet. There's a lot of stuff out there to at least make you consider it.

Have a look at this video before you go:

"We're the future, Charles, not them" - Magneto to Professor X in the original X-Men film.

NAS campaign

I've just signed an NAS campaign, and so should you.

If you go over to Put autism on the NHS agenda you can fill in a campaign aimed at the NHS. As the campaign page states:

"A brand new health body called a Health and Wellbeing board is being set up in your area. It will have a crucial role in deciding what areas of health and social care should be prioritised, and checking if your council and the NHS are being transparent about the support they’re providing adults with autism.

To effectively do their job, they need to understand autism and the current challenges in your area. Otherwise, their role in helping adults with autism will be wasted.

You can help by sending them our message using this online form. That way we can put autism at the top of their agenda from the start."

It does worry me about how Emily will be treated, live, etc. as she enters older stages of her life. Hopefully getting the NHS to think about it and sort things out now will make sure she's well cared for in 10, 15, 20 years' time.

Further proof regarding the gut - brain connection with autism

Read an article today about a boy in the US who seems to have been "cured" of autism by going on a gluten/dairy free diet. I read this with massive scepticism, but feel positive about the overall message.

Here's a clip from YouTube, but I have to warn you, the interviewer is really really REALLY annoying.

Sue and I have been in two minds whether any of the "hokey science" stuff we're doing with Emily is actually of any benefit. This includes cutting out gluten and dairy and also the homeopathic remedies she's been on. They say that dairy effects will be noticeable in 3 days but gluten effects can take 3 months to see.

We haven't really seen any dairy-related changes yet, but are hopeful that all the research does point to a gluten-free gut paving the way to a healthier gut and a lessening of the autistic behaviours we've come to tolerate.

Autism Show

This past weekend we traipsed out to Excel in the middle of East London to attend the Autism Show, put on by the NAS.

We weren't really sure what to expect, but knew that discussion around diet would not be on the table. When we go there, Sue sussed out the seminars (really just 20 minute powerpoint presentations) that she wanted to attend. My role was really to ensure that Emily didn't wander too far off or make too much of a nuisance of herself.
The stands were quite a mixed bag - there were sensory toy vendors, furniture vendors and a LOT of schools. I mean A LOT! Most of them were private and looking to score around £50,000 / year to educate our young. Nice if you have the money I guess.

The main area of the event was the stage area where a number of events were taking place, including Autism’s Got Talent - showcasing the talents of those in the spectrum. Apart from it being crazy loud, it was enjoyable hearing the event from ANYWHERE in the show.

It was a long day, and the seminars I attended didn't tell me anything new, but it was nice to be around like minded people and in a place where we didn't have to explain or apologise for Emily.

Emily's adult future with autism

While all children need help with things like bum wipes and having their meals cooked for them, I do worry about Emily will interact with the world as she gets older. I assume she'll be able to dress, bathe, cook for herself, etc. but I'm not guaranteeing it.

I've just found an infographic from NAS (copied below) that outlines what adults with Autism currently need compared to what they receive in way of aid. It's not really all that optimistic reading at the moment.

Have a look for yourself below and if you feel compelled to get your MP on the case, you can add your name at the National Autism Society website.

Terrible story from Ottawa

I know how tiring it can be with two small kids with special needs. Sue, also feels quite sluggish quite a bit (which may be due to her medication). This means our spare time is usually filled with doing stuff for the kids or praying for bed.

I read a story today on CBC.ca about a family in Ottawa that just got to the breaking point of exhaustion and had to give their Autistic child away to the government.

I can't even begin to imagine the horror I would feel if that was my ONLY option left with Emily.

The article also made me start to extrapolate into the future - something I don't like to do with Emily. At the moment, she's dependent on us for everything, which children should be. As she gets older and peers become more and more independent, I'm afraid she'll remain dependent on us. In some ways I don't want her to ever grow up, so this disparity will never manifest itself.

I know every child is different and there's no guarantee how Emily will end up, but I still can't help but worry and reading articles like this only amplifies my anxiety.

Can you grow out of autism?

There's a lot of stuff in the press lately about children being able to grow out of autism.

Reading these articles, I can't help but think these people they describe only have their toe dipped into the spectrum, and therefore it's easy enough for them to have a normal enough life with therapy and help to be considered normal.

Whenever I think of Emily grown up, it sends shivers down my spine. I really have no idea what to expect, and sometimes assume everything will be fine and normal, as these reports say. Other times, I imagine her in one of those homes that are always in the news for abuse and it just sends my head spinning.

I have to remain of the conviction that a) we're doing everything that is possible for Emily which will b) lead to her having the best life she can. If that life is straddling the line of normal, I'd see that as us winning the lottery, but I count the odds of that outcome just as high.

Early Birds , part 2

We started a course called Early Bird last week. It's put on by the National Autism Society and its meant to help parents learn a bit more about their child and cope with their (the child's) view of the world.

Last week was a bit of a toe dipping exercise, touching on a lot that Sue and I have discovered through Dragonflies sessions and the like.

Tonight we jumped straight in to Communication. It was quite an interesting session and we even have home work!

It made me think about Emily's condition in a slightly different light - as if she's a visitor from another country and can't speak the language. She picks up words and phrases here and there but really has no idea what they mean in context. Kinda reminds me of the Monty Python sketch with the phony foreign dictionaries.

I'm sure "my hovercraft is full of eels" might actually mean something to Emily, but it means Bo Diddly to me.

We also talked about the iceberg method again and discussed that the behaviours you see are only the tip of the iceberg, compared to the symptoms down below.

We're to look at Emily with different eyes over the next week - iceberg-wise as well as dissect her verbal and non-verbal communication.

It's really dawned on Sue and I that as parents of an Autistic child, we're shirking our responsibilities somewhat - this is a full. time. job!

Autism and genetics?

Sue has taken Emily this afternoon to a geneticist appointment that was made ages ago.

Someone who gets paid to know what they're talking about suggested that we might want to clear with this professional to ensure that Holly won't become autistic, or at least review the likelihood.

We have since been told that the correlation between autism and genetics (or hereditary genetics anyway) is about as sound as not being to conceive while breastfeeding - i.e. complete hokum. Although, I'd like to explore further the theory that more scientists and uni profs (the "smart people"), etc. have autistic kids than the general population.

Still, the appointment was made, so it's probably worthwhile to see at least what the geneticist has to say on any matter regarding Emily. I'm just quite sure whatever is discussed it won't be about autism... or at least we'll be told that Emily is autistic because Sue and I are really smart.

EarlyBird information session for Emily

With everything that's been going on with Holly it was nice to devote some time to Emily.

Sue came last night for the first time since Holly's incident on the 3rd of March. We had scheduled ourselves to go to an information session for an EarlyBird course put on by the National Autistic Society that we want to attend.

For 90 minutes we were able to forget our woes regarding Holly, and remember our woes regarding Emily.

The course is going to encompass 12 weeks, including 8 group sessions and 4 home visits.

From everything we saw last night, we can't get onto the course soon enough.

Autistic dinner conversation

Went out for dinner last night with friends and the subject turned to children. Having some around the table deal with special needs children as their job, the conversation was soon high-jacked by discussions about Emily and how she's doing, what we could do better for her, what help is out there we need to get, etc.

It was quite a lively, informative chat and Sue and I took a lot away from it. I did feel continually guilty that we basically took over the conversation with talk about our special needs child, but I think the others we happy to have the discussion and to offer their help.

I guess if you have NeuroNormal children, it can get a bit boring as there's nothing untoward to discuss, no help  above and beyond that you need. Just talk about dance recitals and report cards. I guess.

Behaviour workshop

Had our second ASD workshop at Emily's school today.

It was quite informative, and we had chocolate hob nobs with our tea, so that was a bonus.

We discussed behaviour and rewards and the usual things you'd talk about regarding any child.

With someone like Emily though, the key seems to be visuals. As she has delayed speech and sometimes can't fathom what we're talking about, it's good to find a common point - usually an image or photo - to get either her or our point across.

We also need to ensure that we get to the bottom of any behavioural issues. If she doesn't want to eat breakfast, instead of yelling and throwing the bowl across the room (something we'd never do), we have to empathise with Emily and try to get into her head. Why doesn't she want to eat now? What is a higher priority?

Sometimes, a PECS-powered schedule can come in handy, so Emily doesn't have to think that eating will last forever. We can show her - eat, wash hands/face, read book (i.e. reward).

It's a hard slog and sometimes it dawns on me how much work Sue and I actually have ahead of us.

Autism chat

Sue had gone onto the national autism website and arranged for a parent to parent call to talk to us about autism. I personally think this is a great idea, having parents in the same boat talking to each other, knowing we're not alone in the world.

We had great chat for about 90 minutes, and Sue and I both felt at the end that we were doing what we could for Emily; giving her the care we could and reaching out to those we could.

During the call, the usual pop culture references popped up again - Temple Grandin and Sheldon Cooper from Big Bang Theory. We also threw Abed from Community into the mix of people and characters with the disorder.

The call didn't solve anything, and it was never designed to, but Sue and I felt more at ease with the situation having been able to discuss it and I guess that's probably the point.

It's official. Emily is on the autism spectrum

We met with Emily's head teacher and the local paediatrician (who works closely with Dragonflies) today. It was vaguely billed as "assessment day".

We were told what we'd assumed for ages - that Emily is on the autism spectrum.

However, like all things, there is hope and light at the end of the tunnel. It just might be a different tunnel from the rest of us. We discussed continued learning, whether she'd be able to function as a normal member of society, get an education, etc.

The immediate strategy for Sue and I is to continue Emily's communication, but as we discussed, it really needs to be on her terms. She will talk - and we were told 50/50 that kids in Emily's situation (or worse) talk before they're five - but talking is a part of communication.

Emily already lets us know certain things - she'll bring us a plate or a cup; she'll grab your hand and lead you to the bookshelf; she'll sit on the kitchen floor when she needs to go potty; she'll make your finger point to the phone screen or tablet screen when she wants to see something (invariably a Hairy Maclary video).

I'm not too concerned about Emily getting her point across, it's just that society dictates people get their point across in a conformist manner. Emily can't go into a Cafe Nero when she's 16 and grab the cashier's finger and point at the board for what she wants.

The outcome today was that, with our continued support, there's no reason Emily can't have a fulfilling life and become the world expert in whatever she wants - she just won't probably be a "frontline" worker... so she won't be the Cafe Nero cashier... she might OWN Cafe Nero, though.

Is Emily's condition my fault?

Every week there seems to be new research published on Austism, ASD and it's affiliates like Aspergers.

The latest, published in a copy of the Metro a week or so ago, postulates that parents in technology (check) and/or science (not check) could be passing on the gene that causes autism.

Hey cool. With another one on the way next month, that's really the kind of research I want to be reading!

The positive element from the article was the list of famous historical figures who had autism to some degree - including Albert Einsten, Andy Warhol and Charles Darwin. They all eeked about a place for themselves in history, so there is hope.