Worrying about washing….

There are many stereotypes surrounding autism (ironic really), and one of the most common seems to be that people with autism lack the ability to experience emotions. I can’t say this has been our experience of autism at all, quite the opposite Archie has (and shows) strong emotions.

Sometimes these are easy for us to understand. For example recently Archie often appears  upset because ‘Dan gone different school’ as he will tell us on his talker; usually through some tears. And this is something we would probably have been able to work out using a mixture of tapping and options for Archie to choose  from. It’s something that I can sympathise with, we all have people who are important to us and people we miss when they move away.

Sometimes the reasons behind Archie’s strong emotions are harder for us to understand and here the talker can really be invaluable. A very upset Archie appeared in the kitchen a few days ago. He was howling, with tears streaming down his face and was very cross indeed with me for not being able to comfort him. His upset was out of the blue and I could not think of any recent trigger. We tried talking about Dan but it wasn’t that. The talker sorted it out:

‘Tomorrow lady washing’.

Archie loves our neighbour hanging out her washing (and he loves that she has two washing lines, one in the garden and one on the roof terrace – the talker was also used to share that ’1, 2, washing upstairs’). The almost constant rain of the last few weeks means that he has missed hanging over the garden fence watching her washing. His upset was sudden, overwhelming and the reason for it would have been absolutely impossible for me to guess without the talker. I would never have worked out that rainy days and no full washing line could lead to such strong emotions – even in Archie.

Today there was some washing hanging out, which led to a hopeful ‘tomorrow sun washing’. We’ll see.

The ACE Centre, Oxford

This photo of the Radcliffe Camera in Oxford was taken a few weeks ago on my husband’s phone. It is very nearly twenty years to the day since I spent a frantic lunchtime in there revising between exams. It was the first time in three years at Oxford that I’d stepped foot inside the place (in my defence, I was studying Zoology and the Radcliffe Camera holds Arts collections). I had little time then to appreciate its beauty, but a few weeks ago we sat in the sunshine on some steps opposite and discussed how the view from where we were had changed little in hundreds of years.

My husband and I were were taking the opportunity to indulge in a little trip down memory lane, visiting old haunts  (Richard’s a strange mix of libraries and pubs) but we were in Oxford because I’d been asked to speak about Archie’s progress with LAMP at an ACE Centre network day on autism. This was an interesting day, with presentations from people working with AAC users and from manufacturers of various devices and software. The ACE Centre has provided a one day workshop on ‘Moving on from PECS’ over the last few years, which I have always wanted to attend. We were given a snapshot of this workshop and it did look interesting, discussing why PECS has a tendency to lose effectiveness as PECS users grow older. The ACE Centre has always worked one to one with families and schools in the Oxford area as well, encouraging and supporting AAC use, from low to hi-tech devices and techniques.

I was therefore very sad to read that a decision was made a the end of March to close the ACE Centre. The website home page explains that: The reason for closure is simply financial; caused by a reduction in the income from assessments services. This is, to some degree, a result of the financial pressure that schools and local authorities are under, coupled with a lack of sufficient funding from government sources to cover the infrastructure costs of running a small highly specialised centre of expertise.

This is a terrible loss; the UK is far behind where it should be in implementing the use of AAC and the Ace Centre was leading the way. It had no alignment to any particular supplier and so offered a truly independent assessment service, with people attending the centre able to try out a wide variety of different approaches and devices. Having seen how life changing LAMP is proving to be for Archie it is depressing to see one means of accessing the AAC world is closing due to lack of support from government funding sources. We’re all in this together; except we’re not.

There is a petition that can be signed here, please spread the word.

In better news there is still an ACE Centre in Manchester and there is now a UK based Centre for AAC and autism which provides training in LAMP for those of us in the UK.

Longer phrases

When the talker arrived I decided that I did not want to do formal teaching sessions with Archie. Mainly because he reacts very badly to being adult directed in an educational setting, particularly from me. I’m Mum and I’ve found over the years that if I try to teach him myself it really doesn’t work. He loves working with Nikki his speech and language therapist, and she comes to our house every other week to work in a pretty structured way with Archie for an hour. I then take whatever Nikki’s aims are and try to back them up in everyday conversation.

When the talker first arrived we worked mainly on verbs. Verbs have always been difficult for Archie, I suspect partly because he didn’t learn to imitate until he was 8 years old. If you can’t imitate then verbs are pretty meaningless, because without an understanding of imitation watching someone running or jumping (for example) bears no relation to you running or jumping. I can’t think about this for too long as my head usually explodes trying to imagine what the world was like for Archie pre-imitation. Anyway he has begun to use verbs more and so we’ve moved onto the next target which is increasing utterance length.

For the past two sessions Nikki has been working to get longer phrases from Archie and I’ve been backing this up when possible. So for example Archie would say ‘silver’. I knew he meant silver car but would say ‘silver what?’. Initially this was met with ‘silver silver silver’, but gradually Archie has worked out to reply with ‘car’ and now is beginning to say ‘silver car’ without prompting.

In the last week it seems a little switch has been flicked and phrases are beginning to fall into place with no prompting. Nikki visited last night and asked Archie what he’d done the day before. ‘yesterday sea surfing beach’ came the response. Nikki asked how it was; ‘good’. The screen capture is below (ignore the ‘close’ that was from a previous conversation)

The next photo shows the screen after further conversation. Dan is a TA who has just moved to a new job. Archie starts by asking whether Dan is going to be in school at all (green and purple refer to days of the week). I explained that Dan has moved; ‘Dan gone school’ and Archie later recounted this as ‘Dan different school’. In between you can see him asking for some apple. Notice how eat is often added as an afterthought; he still struggles with verbs (although on the Vantage Lite ‘apple’ and ‘eat’ start with the same button so it does encourage that particular error).

The final photo shows another sequence. Verb in the correct place this time, and refers to another favourite topic of conversation at the moment – the new swimming pool. We’ve had quite a few independent phrases produced around the topic of the old and new swimming pools; ‘old pool water gone’ being another example.

So longer utterances are being produced. This has been reflected in speech as well (although I usually have no idea what is being said). Of course eventually we’ll have to work on helping Archie to produce sentences that are grammatically correct and include all the little words that are currently missing. If he carries on at the rate he’s going, that won’t be too far away.

Kyle Coleman

Oh this is fabulous. A young man with autism, and very limited speech who can sing. Kyle Coleman. You can hear some snippets from a few of his tracks on his website. His album ‘Therefore I Am’ will be released on the National Autism Awareness Day, 2nd April.

Great stuff.

 

Talking about……. being naughty!

Apologies – I was ill, and then I had a lot of work to catch up on so have been rather quiet. I have some video to download and edit and hope to be up and running again as normal soon. In the meantime….

Archie has always loved being naughty. When he was a toddler I would say ‘don’t touch the TV’ and he’d immediately reach towards it, almost touching but not quite, looking at me and laughing. Teasing if you like. Interestingly this sort of behaviour was the reason why we were told ‘he definitely isn’t autistic’ when we first approached clinicians. Perhaps even more interestingly when I mentioned this sort of behaviour post diagnosis I was told I was imagining it. Hmm.

But anyway, one of the big hopes in providing a sensible system to communicate is that it will reduce challenging behaviours. Now a lot of Archie’s challenging behaviours centre around things he knows he shouldn’t be doing. A big one at the moment is sniffing people (please don’t ask where). So he would sniff someone and be told off and find the whole process hilariously funny (there are ways of managing this such as not over reacting to being sniffed, but there was still sniffing involved). I’ve noticed that recently he uses the talker to tell me who he is going to sniff on which day of the week, but then crucially doesn’t do it. Talking about it is enough for him. Archie tells me, laughs his leg off and then moves on. He gets his chance to tease, has a good laugh, and in the meantime no member of the general public is harmed.

Good stuff. Will be back online properly over the next few days.

The voice of choice

Another short clip. I found this interesting. We regularly chill and chat over google maps and we’ve always managed to communicate pretty successfully using a combination of pointing, gesturing and vocalisations (from Archie I mean). Here while chatting about some recent roadworks it became important to Archie to have the talker say ‘road’, even though I had shown that I understood what he meant. I think this was his first request for me to find a new word on the talker for him, and he also read (and completed) the sequence himself, so must have understood how Icon Tutor works.

Archie’s humming The Stone Roses a lot this week if you’re trying to place the tune!

Lessons for life

We had Archie’s annual review last week. At the end the head asked us what we felt was important for Archie in the future. My answer was quite simple, he has to be able to get out and access life. To do this it is essential that he learns to behave appropriately, particularly in public (which of course can be aided by better communication etc etc).

So onto this week and it’s half term. We’ve had our moments; a rather noisy public meltdown when we had a difference of opinion about where we were heading for example, but in general he’s relatively easy to get out and about, especially if I have a helping hand from a PA courtesy of direct payments.

So far we’ve headed to the beach (of course) where Archie accosted Tim the surf coach and helped himself to his car. And we’ve been on the Plymouth Wheel and skipped happily along the Hoe (until we had our difference of opinion). For now his behaviour is manageable. Of course the tut tut brigade will always tut but most of the time he behaves in a way that I think is acceptable.  We’re aware that could change and I remain an enthusiastic supporter of The Challenging Behaviour Foundation. They do good work, and provide some excellent resources.

For the moment we enjoy the good times and assume they’ll continue.