Autistic much?

It's only a few weeks now until the Child Development Clinic and, possibly, a formal diagnosis. The label doesn't mean anything though. It's like going to the Doctors with a cough and the doctor says: "you have a cough".

But what the doctor does then is confirms that there isn't something nasty causing the cough, that maybe you can't see, and then he or she gives you a prescription. The diagnosis will likely confirm what we think and hopefully we will be 'prescribed' a statement of special needs which then means we get more options for interventions, a tailored IEP and other, er, stuff. We'll see. I'm still pretty relaxed right now.

The following letter is written by the SEN (special needs coordinator) called in by his nursery. Her assessment will feed into the whole multi-disciplinary CDC thing. I know I should probably be sad or something reading this, but I must be going straight to hell because I laughed! The thing is, I know him, I know I'm blessed to have him and, just like with an Apple iPad the smart thing to do is focus not on what it doesn't do but what it does do and does very well. We won't mind if you laugh too...

(you can click on the images below to biggerate them)

Yeah, I think that counts as 'on the spectrum'. He can eat, go to the toilet and enjoy books. What more do you need to enjoy life?

The Battles of the Autistic Thinker

❝What really seems to throw people is that they can’t seem to understand that a six-year-old boy who knows all the planets in the solar system and who can already subtract five from three may not yet have worked out that it is inappropriate to climb in the dust-bins during play time❞

(Marc Segar, The Battles of the Autistic Thinker)

Ok, kids, it's beanbag time.

I might have mentioned how completely awesome Tokoroth's nursery have been given that they are a private nursery (albeit a Montessori).

In addition to the assessments taking place within the NHS framework, coordinated by Tokoroth's health visitor, it appears we have a second stream of activity taking place being run by the local SEN co-ordinator.

Visiting this week the SEN lady kindly dropped off a questionnaire for the nursery to complete, all FIFTY FOUR pages of it. A number of questions are posed in this document such as:

Can roll plasticine into a sausage?
Stands on tip-toe when playing?
Able to throw a bean-bag into a bucket?

The nursery are required to answer 'Never', 'Sometimes' or 'Always' and add comments on 54 pages at approx. 16 questions per page.  So how do you answer questions like the above if you've never seen him roll a sausage or throw a bean bag?

Do you a) leave those questions blank b) guess based on similar activities or c) something else?

The nursery chose the third option. How did they go about answering the questions? They enagaged Tokoroth's whole class in a series of activities to answer the questions. If they didn't know the answer to the question, they found out!

Can roll plasticine into a sausage? "Ok, kids, we are all going to make sausages!"

While 20 kids got playful with the play-doh Tokoroth was carefully observed and the question answered.

Able to throw a bean-bag into a bucket? "Ok, kids grab a bucket and a bean bag...."

Stands on tip-toe while playing? "Ok, kids, it's Stretch and Grow time..."

If there was a question they couldn't answer they invented a classroom activity so they could observe Tokoroth and record an answer.

A-mazing.

When tantrums go bad

We've all done it. Regardless of whether you have children or not, we've definitely all done it. We've observed the older-than-a-toddler-child having a tantrum, screaming, blue in the face, writhing on the floor (or the pavement) or running around the supermarket like a human firework and we've watched the parent, usually the mother, pinched and drawn, try to console (or physically restrain) their offspring them and we've passed judgement.

"The child is spoiled!"
"Bad parenting"
"I wouldn't accept that behaviour."
"When I was a child my Mum would have silenced me with one, quiet, word."

I've definitely thought all those things. I've always held true to the quote of "judge not lest you be judged" but I've definitely thought those things and I have been, well, judgmental.


Googled for "tantrum" - Waaaaah!

Children around the age of two have tantrums, you kind of know this instinctively even as a non-parent. The phrase "terrible-twos" seems to be embedded into our psyche so even non-parents can, on occasion, nod with faux-knowledge and mutter "ah, the terrible twos...". I guess before you are a parent you just think to yourself that, if I ever have children (and you always think you won't), then I'll just avoid the supermarket for a year (God bless Ocado!) and never allow myself the humiliation.

Not taking your children out in public is tricky but supermarkets can be avoided and 24 hour shopping means you can take them while they are half asleep and the Tutters are fewer. However, none of the how-to-be-a-cleverer-parent guides on the terrible-twos give you a warning that you might end up with a child that looks four or five or even fifteen on the outside but has the bubbling incandescence of the most terriblest toddler-terriblis (I am aware that phrase is more illiteration than alliteration, thanks).

All children will have tantrums at one point or another in their lives. Inevitably, some of these tantrums will occur in public. Children with autism can have tantrums at a much older age than those children who are typically-developing. Unfortunately, a public tantrum by an older child can draw much criticism (tutting, eye-rolling!) from those in the area; this makes for a very uncomfortable situation. I can assure you of this.

So, no-one explains that an everyday supermarket-toddler-tantrum is light relief compared to the episodic meltdown that is characterised by cognitively atypical children with ADD/ASD style behavioural traits. A rigid, screaming, apoplectic child who is inconsolable i.e. cannot be silenced or bribed. Oh, and did I mention, these can happen several times a day!

All of this pre-ramble is a way of introducing a recent entry, Growing, on Mama Be Good, where the author, Brenda, sums up my oh-so-very-different-now opinion but in quite beautiful prose. I particularly like her post because it starts and ends with a quote from Dr Seuss' "The Grinch".

"I learned to suspend judgment - of children, of parents, of behavior. I learned that acceptance comes in its own time. I learned to give up a vision of my child's life. I learned that the vision wasn't a terribly good one after all. I learned to lighten up. I learned that toots are pretty funny.

I learned a whole lexicon. Before Jack was born, I thought "developmentally delayed" was just a polite way to say "intellectually impaired." I, like many others, thought autism meant Rainman. I didn't know anyone who had a special needs child. I thought babies that had to wear glasses were just the saddest thing. Talk about Grinchful ignorance."

So, yeah, apologies for the pre-amble ramble, go and read Brenda's post and when you see me walking out of the Brent Cross shopping centre trying to calmy talk down an episodic Tokoroth (who has a lovely habit of calling out "Help! Help! when I am dealing with him) please try not judge me, just, you know, point and laugh.

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.