Measuring the AQ

Disclaimer: dear casual reader, this post is a bit technical, mostly posts here are funner :)

Disclaimer 2: these are self-administered and self-scored tests. They are not intended as a diagnosis but as a screen and I have completed them for interest as Tokoroth is already in the middle of the series of diagnostic assessments. The fact that I score in the BAP range is entirely consistent with current theory.

I spent a lot of today calculating Tokoroth's Autism Spectrum Quotient (AQ). The problem is that he's too old for the Q-CHAT (Quantative Checklist for Autism in Toddlers) which is ideally applied pre-24 months and too young for the AQ for Children.

All of the tests are available to download from Simon Baron-Cohen's website: http://www.autismresearchcentre.com/ which is a website I wish I had found a lot sooner. I discovered it because I am reading his latest book which I suspect my current SK124 OU course is based on.

I decided to run with the Q-CHAT but retrospectively answer his questions as he was at 2 with some annotation of where there has been change.

http://dl.dropbox.com/u/41893/Completed-Q-CHAT.pdf (score: 62/100)
(the red ticks are the answers for his brother, Little M, which I used as a control set of answers from a typically developing child)

I then ran the standard AQ-Child for children 4+ years

http://dl.dropbox.com/u/41893/Completed-AQ%20-Child.pdf (score: 105/150)

and finally, as advised I ran the AQ-Adult against myself:

http://dl.dropbox.com/u/41893/Completed-AQ-Adult.pdf (score: 27-31/50)

The reason I have 27-31 is that I kept re-interpeting the questions and that's the range I fell between. Interestingly it turned out I wasn't the only one self testing and a conversation on Twitter (with @melph) led me to an online resource for the same test on wired.com.

In the first major trial using the (adult) test, the average score in the control group was 16.4. Eighty percent of those diagnosed with autism or a related disorder scored 32 or higher. So, now I have tests and scores. What I don't have, yet, is a clear understanding of how to interpret the scores for the Q-CHAT and the AQ-Child.

I think it's fair to say that Tokoroth scores pretty high and I am nudging but not on the disorder side of the spectrum. I was a little higher than I expected but the test means very little on it's own. What was quite funny was that after running the tests I took a break to build some Lego with Little M. I found this very relaxing. When I returned to the ARC website I found a link on Lego therapy!

[This post is a work in progress]

edit: Interesting, according to the book, between 27 and 32 is a classic range for BAP.

Echolalia 2 - Paint!

(click on the title to play the audio)

There must be an easier way to embed audio, I'll work on that. Again, the context here is bedtime, sat up watching a little bit of Tom and Jerry ahead of wind down and reading time. I try to engage with Tokoroth using his wallchart to try and encourage him to count and verbalise. I have some success but it goes predictably wrong along the way. Some of his responses to his questions make me smile a lot.

The good news here is that echolalia like this is a sign of him trying to speak, he just doesn't quite know how to form the words he needs. It's very similar to the babble you hear from a toddler when they process words they have heard in the cots/beds in the early hours.

The speech delay website I found earlier makes it clear that this condition can exist outside of autism and given that his repetitive behaviour is quite low this will be an avenue that gets explored, indeed it is the SALT (speech and language therapist) that will perform his next assessment in the nursery,

Echolalia - Story time (audio)

(click on the title to listen to the recording)
(context: bedtime, sat up in bed 'babbling' as I got him ready for bed)

I think I have given up on the 'big' post on Echolalia and have decided to break it into smaller posts. The purpose of this to record snippets of Tokoroth's speech, his receptive and generative speech specifically and to capture his echolalia, if that's even what this is. Remember I am making observations based on what I have read from sources that I trust. I am a lay person therefore it is entirely likely I don't have a clue what I am talking about. Caveat over, let's begin.

What is echolalia?

The flippant answer would be: "what is echolalia?" because it is, simply stated, the repeating of speech as opposed to the generation of speech. Immediate echolalia is literally repeating back the question as a form of answer, Delayed echolalia is the repeating back of phrases (heard on the TV or from people) randomly and out of context days, weeks or months later.

There is a quite detailed explanation of the disorder on a US 'special ed' website which points out this sort of babble is quite normal in toddlers:

"Echolalia occurs in normal language development yet decreases as the typically developing child gains more spontaneous generative language. In children with autism, echolalia occurs with greater frequency and lasts for a longer period of time as the child with autism typically experiences significant difficulty developing spontaneous, generative language skills."

Also on that website is an example which actually applies 100% to Tokoroth:

A child with autism is very anxious about where he will be going after school as the destination changes frequently. He says repetitively throughout the day, "Go to grandmas?"

He says that. Exactly that and, probably, for exactly that reason. Right, short and sweet, example one of his echolalia and an explanation of what it is. I intend to collect more examples to feed into his, eventual, multidisciplinary assessment.

Mind The Gap

The community nurse approved (or at least went along with) our decision to keep Tokoroth in the Montessori and also seemed impressed by the approach they had taken towards inclusivity. This is apparently quite exceptional for a private nursery that doesn't get any allowance for special needs children.

I have asked the nursery to obtain a written copy of the assessment so it can be included in the overall diagnosis by the pediatrician when we eventually proceed to the Child Development Clinic assessment stage. We have now re-booked his 'official' in-nursery assessment to take place at the Montessori.

Given current modern thinking on intervention this means we should have a statement of special educational needs well before he actually starts Reception. We're pretty lucky here that we had an inkling of Tokoroth being on the spectrum and going straight to the health centre where we struck gold with the community nurse who assessed him. Speaking last night to the mother of a child recently diagnosed with Asperger's (or HFA depending on the day of the week and pediatrician they see) they made the classic mistake of seeing their GP first.

In fact, come to think of it, we also got derailed by our GP. We presented Tokoroth, aged 2, with what we perceived , correctly it turned out, as hypersensitivity. This was when I was still not fully convinced of a bigger problem because I only knew the diagnosis for classic autism and not the ASD sub-types. The community nurse may have actually suspected ahead of us and referred us to the GP to get Tokoroth referred to audiology. The nurse could have done this but the protocol is to go through the GP.

The GP looked at the letter from the community nurse, looked in his hears, clapped his hands a few times (I'm paraphrasing) and reported that his hearing was absolutely fine. The GP did not refer him to audiology. It was a year later that, once more, we presented Tokoroth back to the nurse with our increased awareness of a) there being a bigger problem and b) the likelihood that he was on the spectrum (ASD was, by then, on my radar).

The community nurse was incredibly annoyed that the GP had not carried out the referral. Hypersensitivity does not mean he can't hear or that he has any physical problem. Having satisfied himself of that he should still have carried out the referral a) because that's what he was asked to do and b) because hypersensitivy can be an indicator of other problems, i.e. autism.

So, even armed with knowledge and a bloody good health centre community nurse we lost a years worth of intervention because autism and other similar disorders are off the radar for many, but certainly not all, GPs. It's a known issue and it's being addressed. A GP can even miss her own son's autism.

I'm not being negative here because our GP is a good GP and the rest of the NHS machine around the ongoing assessment has been bloody good. I'm just aware that we had our own knowledge, a child psychologist in the family and a good health centre to keep pushing. I do wonder how many children taken to the GP by their parent fall through the cracks. As recently as 2002 over one in eight GPs said they would not know how and where to refer a patient with autistic spectrum disorder.



Anyway, for us all is going well and little Tokoroth grows into an ever more entertaining and amusing child every day. He is joining in play with other children, his delayed echolalia sits alongside an ever growing vocabulary and his repetitive behaviour is arguably more flexible more than mine currently is. We just keep walking the walk and see where we all end up.

Broader Autism Phenotypes

Spending the last few months reading about the suspected aetiology of autism, a lot of the theories about neurons, serotonin and oxycotin really make sense. I think anyone who lives with a child with autism, even if they are not a broader autism phenotype (BAP) themsleves will recognise aspects of their children's behaviour.

For me, as for many other parents of autistic children, learning about the continuum is a revelation but learning about BAP explains not just about the genetic link and the passing on of genes susceptible to autism but it starts to actually shine a light on your own behaviour. It was great to read this from that BAP link above:

“bored, sensitive, and isolated as I observed the social culture around me, feeling uncompelled to jump in and participate in what seemed superficially meaningless. I wasn’t entirely aloof, but I preferred being with only one friend at a time. Too many people made me edgy. Rehearsing social situations in my mind over and over and, but both before and after they had occurred, sometimes speaking them aloud to myself."

I'm still learning about the definition of BAP but informally taking some of the tests I score highly for inclusion in this category and this makes much more sense than my earlier thoughts about being on the spectrum myself, which wasn't quite a fit. I guess it's not really important in the bigger picture of getting Tokoroth the right help but as we look for answers in one place we start to ask questions in others.

Relax!

A couple of months back I think I was worried that diagnosis was taking too long while still being very aware that, for us, the process of assessment and the path towards diagnosis was put in place much more swiftly for us because a) we already suspected ASD and weren't afraid to raise it with with the health worker and b) because that same health worker has been amazing in referring him to audiology, the speech and language therapist (who was herself amazing) and organising the in-nursery assessment all within a few short months. For some people this process can take a lot, lot longer.

It wasn't enough for me though as I backflipped and somersaulted through denial and acceptance, yes he is, no he isn't, is, isn't, is, isn't, aaaaagh! I just wanted to know. But more recently, as some semblance of sanity kicked in, or what approximates sanity for me, I started to take in some of the course material I have been learning on SK124 along with the stories I was reading on other parent's blogs along with first hand accounts from people writing about their experience of autism, and started to calm down a bit.

It doesn't matter one iota if we get a diagnosis now, at age three, because they can sellotape a label to his head that says "PDD-NOS" or "HFA - Handle With Care" but we won't have a clue what sort of thirteen year old the three year old will become until, well, until he's thirteen which was exactly the point made in the comment I quoted below.

I decided that it's silly to stress over labels and diagnosis, all that's good for is getting him help in the classroom and they are already doing that sans-label. It's also entirely unneccesary to feel that I have to coax him into our world when it's clearly so much more fun in his world.

Montessori

Ach. Quiet for weeks, then I can't stop. I have to get something off my chest though, something good, which I hadn't really realised was happening.

Tokoroth is at a Montessori nursery. It's not unusual for parents with autistic children to take this route to pre-school because of the way the sessions are structured

"...its method of education is characterised by emphasising self-directed activity on the part of the child, and clinical observation on the part of the teacher to stress the importance of adapting the child’s learning environment to his or her development level"

They flagged with us that he wasn't integrating well with his peers (he tolerates other children but just ignores them most of the time as he doesn't realise they *want* to speak or play with him) and once they realised we already suspected ASD and were following a path towards diagnosis they organised an in-nursery assessment by a specialist.

Based on the report and recommendations made by the specialist the Montessori have now, incredibly, involved his classmates in talking to him, involving him in their play, after the teachers briefed his classmates and have made including Tokoroth, in conversation and play, a big game for all of them.

The nursery weren't asked, or expected, to get involved in this process and no help over and above the style and format of their methodology was anticipated but, wow, just wow.

Lovely comment

I've received some really nice comments from people, from friends and from people who are on a similar journey with their children. As I said before I feel that we're kind of lucky in many respects, he is such a strong and amazing character we are truly blessed (you can probably tell from my tone that he's tucked up in bed asleep) but I really value some of the insights that have been shared by others. This is a comment that was left on the blog a few posts back which I think is worth sharing.

"One thing I can observe is that we never know how things are going to go. Things are not linear. Looking at where our guy was at four, we could not have predicted were our guy would be at 14. We could not even have predicted roughly what things he would be best at. Here is a guy who was not speaking in anything near full sentences until age eight and at age 14 his French teacher tells me he is one of two or three kids in the class who really "get it" and there is nothing he likes better than talking with a bunch of his friends on Skype.

Mind you, what we might consider fairly simple questions like "Have you done your homework?" can be very difficult. Go figure. There is no point trying to predict other than to predict that, like everyone, with love and encouragement, our kids will grow.

I like your blog. The approach you are taking, seems to be the one that takes the people I've seen on this journey the furthest."

If only *I* knew what approach I was taking. Something akin to Dory in Finding Nemo:



"Just keep swimming, just keep swimming, just keep swimming, swimming swimming!"

From Grandma

Little Tokoroth loves, LOVES, his grandmas and grandads. My Mum was looking after him yesterday and put him and Little M to bed. This update is from my Mum:

"Last night he got into bed and called me and patted the bed so I got in with him. Little chap gave me eye contact and a big grin as I lay with him and pulled up the covers.

'Sing Grandma' said he, so in my usual off key way started off, little one joined in and when he didn't know words sang "la la la". I suggested he sang to me and he did so after a bit of thought and gave me eye contact the whole time, then proceeded to tell me a story.



I suggested to him that this might be Grandma's bedtime story and he thought this was very funny, jumped up, fell on top of me and had a giggling fit poking me to ake up' which we both thought was very funny.

Lovely half an hour and then he stayed put till I had bathed Little M and he just gazed at the ceiling peeping out from under covers when I popped in to check him, greeting us with a very bright 'Hello Grandma, Hello M.'

Beautiful child love him to bits. xx"

I actually credit my Mum and Dad, who look after him a lot, with helping him to emerge from his secret world and he is at his most outgoing and most fluent when he is with them. It would appear that you never reach a point in your life when you stop learning from your parents.

There's never been a better time

I'm immersed in a world of blogs written by amazing people with amazing stories and who are overcoming way greater odds than I am faced with. I was reminded, again, of how lucky I am by spending a couple of hours with Tokoroth this morning where he was trying his best to communicate, flashing a smile at me and holding that eye contact for just a bit longer than the usual fleeting second.

I'm not blind to the challenges we all face nor am I regressing back into the recent phase of denial but reading blogs by people who walk the same road (I'm looking at you Whitterer) make me feel like my son (and his family) are part of a new community. That there are other people out there who share the same offbeat humour and write blogs about their own, or their children's, struggle with autism, that make me giggle like a girl make it all just so much more manageable.

Having shared this diary with some friends on Facebook I have been overwhelmed with the messages sharing stories of friends who have children diagnosed with autism/AS/ASD and also from people facing challenges with their children who have not realised there is an explanation for their children's behaviour.

My friend of many years is a special needs teacher. He teaches science to secondary school children with a variety of developmental disorders. I loved his comment to me today as we talked about how much more is known about the aetiology of autism and ways to manage it:

"You're lucky, really, there's never been a better time to be autistic." =)