My wife and I attended a training session this week, run by the excellent Positive About Autism group. The sessions are aimed at parents and teachers to provide some insight into the condition and techniques to deal with them.
One technique which really rang a bell with me will shortly be deployed to help L manage one of the behaviours of autism. Many may refer to it as verbal diarrhoea (spelt without the aid of a spell-checker no less!), others a hint of obsessive compulsive disorder, but for us it is simply not knowing when to stop talking and this is exactly the point.
When do you know when to stop talking? Depending on what you read, anywhere between 70% and 95% of communication is non-verbal, it is the shape of your body, the faces you make, your tone of voice. The autistic child has no comprehension of what goes on inside another person, what they might be thinking or feeling, and needs to be taught how to control this.
A typical example may be lego. L is a huge fan of Lego Ninjago at the moment, he watches the cartoons, he collects the models and plays with the figures. He knows it inside out - the characters, their backstory, the models and the baddies and the goodies. And boy can he share it!
Me: Shall we go sledging? (The snow based activity, not the act of abusing another cricketer at the crease in an effort to distract him from the incoming ball for my Australian/Cricketing friends)
L: Great! Yes please, and then can we build an igloo?
Me: I'm not sure there is enough snow for that.
L: Well, I can gather the snow from the garden and if that's not enough we can get some from the front and off the cars; we can pile it up into walls and use it as a hide for when we play snowball fights, and then we can put a roof on, then we can make a snowman with a carrot for a nose and raisins for eyes, or maybe stones. We could use a parsnip instead for the nose, or a stone if we wanted to give him a round nose...
Me: I'm really not sure there will be enough snow
L: Well if we get all the snow from the garden we can see how much there is and then get more from out the back or off the sides of the road, maybe....
Me: Thanks L, let's just see when we get home.
At no stage during this conversation did L look at me to see my eyes roll, my body preparing to go out the door, even me walking away from him as he wittered on. Nothing deterred him in his quest to impart the entire thought process of his planned snow play.
We learned at the course about a technique referred to in Jennifer 'Toole's Book 'The Asperkid's (Secret) Book of Social Rules' whereby you explain to the child that when explaining something the 'topic' can be thought of as your arm, the 'subject' your hand, and the 'details' are the fingers. It is ok to talk about a topic to someone ("I like playing in the snow") and maybe even the subject ("I'm going to build a snowman"), but unless you establish the other person shares their interest and wants to pursue the conversation further, don't wiggle the fingers, the details, because the other person may not want to hear about it.
I have yet to read the book to fully elaborate on how this can be implemented, but the idea certainly struck a chord.
Our efforts will be to teach L about eye-brow raises, eye-contact, body language, little verbal cues such as 'hmm?', 'yes', 'I agree', 'go on' etc. If he doesn't get them, he shouldn't wiggle the fingers.
So we continue to learn about ways to deal with his behaviour, unfortunately, after a fantastic fun time sledging, we were all too cold to discover if we had enough snow in the garden to build anything, but there's always tomorrow.
Drive safe in the snow everyone.
Tom
2013
Well 'tis the season to recommence blogging (fa la la la la, la la la la).
I've been a little slovenly again of late, mostly due to plain business, but also because L has been progressing reasonably well. Well, at least there have been very few new challenges to share with you anyway.
Christmas is always an interesting time of year, and with young children, you can rarely go wrong. Their excitement is palpable, contagious and wonderful. At one stage around a week before christmas, I caught them both lying on the rug, watching the 'sleeps to christmas' app counting down the seconds to Christmas!
It also presents challenges, not least because as an annual event, it doesn't really fall into the easily planned and regular activity which an Autistic child relishes. We had spent a long time preparing the boys for Christmas though - Christmas lists, advent calendars and even the 'elf on the shelf' to keep an eye on them. Unfortunately, the elf wasn't exactly welcomed with open arms.
The idea is simple - the elf arrives with a story book on 1st December. The story explains how he goes back to santa each night to report on the boys behaviour, and each morning is in a different place in the house. Sounds delightful?
Well, clearly the thought of a potential living being in the house, one who can move freely around and appear anywhere, and one who watches the boys with an eerie silence much like the weeping angels in Doctor Who initially provoked a not disimilar reaction when, the next morning, L did not react well to 'Odie's' new location.
Needless to say, we decided to keep him downstairs for the next few days.
After a while, he was welcomed into the family. L even spent time talknig to him and explaining the 5 gifts he wanted from his list and what he was going to do with them. I hadn't quite appreciated originally, but very soon it was apparent that here was the dream conversational partner for L. Someone who wouldn't keep interrupting him because he was labouring the point after 15 minutes of explaining in minute detail. Someone who wouldn't stop him and say he has already heard it. Someone who wouldn't say no. That he didn't say anything wasn't a problem.
Odie wrote a few letters back to the boys and became a very good idea, so I thank my wife for that and, as per Odie's last letter, left on Christmas morning after he had gone home with santa, and leading to the motherload of presents (14 each in the end - they were clearly very good boys), eagerly await next year and Odie's return on 1st December 2013.
Only 1,213,730 seconds to go (as of writing!).
I've been a little slovenly again of late, mostly due to plain business, but also because L has been progressing reasonably well. Well, at least there have been very few new challenges to share with you anyway.
Christmas is always an interesting time of year, and with young children, you can rarely go wrong. Their excitement is palpable, contagious and wonderful. At one stage around a week before christmas, I caught them both lying on the rug, watching the 'sleeps to christmas' app counting down the seconds to Christmas!
It also presents challenges, not least because as an annual event, it doesn't really fall into the easily planned and regular activity which an Autistic child relishes. We had spent a long time preparing the boys for Christmas though - Christmas lists, advent calendars and even the 'elf on the shelf' to keep an eye on them. Unfortunately, the elf wasn't exactly welcomed with open arms.
The idea is simple - the elf arrives with a story book on 1st December. The story explains how he goes back to santa each night to report on the boys behaviour, and each morning is in a different place in the house. Sounds delightful?
Well, clearly the thought of a potential living being in the house, one who can move freely around and appear anywhere, and one who watches the boys with an eerie silence much like the weeping angels in Doctor Who initially provoked a not disimilar reaction when, the next morning, L did not react well to 'Odie's' new location.
Needless to say, we decided to keep him downstairs for the next few days.
After a while, he was welcomed into the family. L even spent time talknig to him and explaining the 5 gifts he wanted from his list and what he was going to do with them. I hadn't quite appreciated originally, but very soon it was apparent that here was the dream conversational partner for L. Someone who wouldn't keep interrupting him because he was labouring the point after 15 minutes of explaining in minute detail. Someone who wouldn't stop him and say he has already heard it. Someone who wouldn't say no. That he didn't say anything wasn't a problem.
Odie wrote a few letters back to the boys and became a very good idea, so I thank my wife for that and, as per Odie's last letter, left on Christmas morning after he had gone home with santa, and leading to the motherload of presents (14 each in the end - they were clearly very good boys), eagerly await next year and Odie's return on 1st December 2013.
Only 1,213,730 seconds to go (as of writing!).
Special Needs World - aka L'Land
It's half term week and we decided to take the boys away to Legoland for 2 days. We managed to keep it a secret which was no easy task - not because they were working us out and finding little things around the place, not even when my sister blurted it out over the dinner table, bt because we were excited too and frankly desperate to tell them!
On Monday evening we told them we were going away and would be spending a night in a hotel.
They love hotels - the adventure of sleeping in one room, living together in a small space, sleeping in such close proximity to one another, it is the most exciting thing in the world. So, they were happy. Not once did they ask about why we were going away!
En route to Windsor, we still managed to keep it secret up until we were 5 minutes away. We turned around and told them and they were ecstatic! It really is worth the wait if you can keep it a secret, to see their faces was fantastic.
So, we went into Legoland and faced what to any unprepared parent of an autistic child would be hell on earth. In order to get into the place, through the gates into 'The Beginning' where the shops are, took 2 separate queues. The first to turn our piece of paper confirming our booking into a ticket, and a second to scan our ticket through the gate. We were blessed as our two boys waited patiently, however we knew that once through the gate, the queues would continue.
Now, not one to miss an opportunity to double your ticket price, Legoland offers a system called Q-Bot. Q-Bot works by allowing you to arrive at a ride, start Q-Bot and then return when it is your time to go on the ride. Q-Bot queues for you effectively.
This is the theme park class system, where the upper 'Q-Bot' class get to spend their £15 per person and jump the queues, whilst the lower proletariat wallow in queues for hours on end dealing with impatient youngsters.
An autistic child can struggle in this environment, where the queue presents so many questions and prompts so many regulations as to how to behave. We were fortunate in that L behaved impeccably most of the time, and besides, he wasn't too bothered about the rides and preferred admiring the lego models and looking forward to the evening in the hotel!
It did get me thinking though - would Legoland consider having a special day for Special Needs Children? On this day, everyone gets a Q-Bot, there is lots of space and patience all around, people are there to answer your questions and those of your children and most of all, eveyr other parent in the place has experienced a similar set of 'non-typical' behaviours to you, and therfore you are not some social pariah as soon as your youngster lays down a fat tantrum in the middle of the walkway between the shops and the toilets.
There is an excellent local play centre near us, Jungle Boogie in Codsall, and they are going to be trialling a special needs evening where those parents of children with special needs can come and get some peace - or perhaps not so much peace, but at least a sympathetic ear or knowing exchange when those sweet adorable volcanoes erupt. I realise that this is still a rather open invitation - that parents of children with aspergers may share very little in common with a deaf child, but at least it is a start, a gesture which I think marks a welcome opportunity and I hope that all local readers in the area give them a go.
Anyway, it got me thinking more, why isn't there a special place to go - not just an education centre, or a garden park, but an entire theme park, dedicated to children with special needs? With special sensory areas - not a room but an entire walkway the size of a roller-coaster. Pitch black play rooms, monitored by infra-red cameras of course, but where the seeing are disabled, and those without sight are advantaged. Where there are no queues, where people can book slots on the rides, and also explore how they work, get tours of the roller-coaster underside for those high-functioning autistic children obsessed with how things work, where the roller-coaster can go at different speeds depending upon the disposition of those riding. How about a theme park where the needs of the child who isn't into the thrill or the adrenaline, but who is bored by Peppa Pig Land, or Thomas Land, or simply too old?
Special Needs World (I'm still working on the name) or L****Land as my son already calls it.
Does anyone have a large plot of land in the Midlands and investors willing to invest c. £50M on it's development?
Let me know.
Thanks.
On Monday evening we told them we were going away and would be spending a night in a hotel.
They love hotels - the adventure of sleeping in one room, living together in a small space, sleeping in such close proximity to one another, it is the most exciting thing in the world. So, they were happy. Not once did they ask about why we were going away!
En route to Windsor, we still managed to keep it secret up until we were 5 minutes away. We turned around and told them and they were ecstatic! It really is worth the wait if you can keep it a secret, to see their faces was fantastic.
So, we went into Legoland and faced what to any unprepared parent of an autistic child would be hell on earth. In order to get into the place, through the gates into 'The Beginning' where the shops are, took 2 separate queues. The first to turn our piece of paper confirming our booking into a ticket, and a second to scan our ticket through the gate. We were blessed as our two boys waited patiently, however we knew that once through the gate, the queues would continue.
Now, not one to miss an opportunity to double your ticket price, Legoland offers a system called Q-Bot. Q-Bot works by allowing you to arrive at a ride, start Q-Bot and then return when it is your time to go on the ride. Q-Bot queues for you effectively.
This is the theme park class system, where the upper 'Q-Bot' class get to spend their £15 per person and jump the queues, whilst the lower proletariat wallow in queues for hours on end dealing with impatient youngsters.
An autistic child can struggle in this environment, where the queue presents so many questions and prompts so many regulations as to how to behave. We were fortunate in that L behaved impeccably most of the time, and besides, he wasn't too bothered about the rides and preferred admiring the lego models and looking forward to the evening in the hotel!
It did get me thinking though - would Legoland consider having a special day for Special Needs Children? On this day, everyone gets a Q-Bot, there is lots of space and patience all around, people are there to answer your questions and those of your children and most of all, eveyr other parent in the place has experienced a similar set of 'non-typical' behaviours to you, and therfore you are not some social pariah as soon as your youngster lays down a fat tantrum in the middle of the walkway between the shops and the toilets.
There is an excellent local play centre near us, Jungle Boogie in Codsall, and they are going to be trialling a special needs evening where those parents of children with special needs can come and get some peace - or perhaps not so much peace, but at least a sympathetic ear or knowing exchange when those sweet adorable volcanoes erupt. I realise that this is still a rather open invitation - that parents of children with aspergers may share very little in common with a deaf child, but at least it is a start, a gesture which I think marks a welcome opportunity and I hope that all local readers in the area give them a go.
Anyway, it got me thinking more, why isn't there a special place to go - not just an education centre, or a garden park, but an entire theme park, dedicated to children with special needs? With special sensory areas - not a room but an entire walkway the size of a roller-coaster. Pitch black play rooms, monitored by infra-red cameras of course, but where the seeing are disabled, and those without sight are advantaged. Where there are no queues, where people can book slots on the rides, and also explore how they work, get tours of the roller-coaster underside for those high-functioning autistic children obsessed with how things work, where the roller-coaster can go at different speeds depending upon the disposition of those riding. How about a theme park where the needs of the child who isn't into the thrill or the adrenaline, but who is bored by Peppa Pig Land, or Thomas Land, or simply too old?
Special Needs World (I'm still working on the name) or L****Land as my son already calls it.
Does anyone have a large plot of land in the Midlands and investors willing to invest c. £50M on it's development?
Let me know.
Thanks.
Black & White Boy
At the moment I am considering whether to actually implement the visual timetable at home for the morning routine.
My wife and I have discussed it a few times over the last few months but never felt it was definitely necessary, but at the moment I think that perhaps it is time.
For the uninitiated, a visual timetable is just a row of pictures or words which tells L what to do and in what order. So for example, the first picture may be of him waking up, next its him going to the loo, then choosing his breakfast, then waking mom or dad up, then eating breakfast etc. etc.
L has a habit of becoming deeply obsessed by things, whether they be TV programmes, computer games, moshi monsters, anything. Once he is in an obsession then he rarely talks about anything else, sharing every last detail with us. Now, I don't have a problem with him sharing this with us - sometimes I encourage it. It is a rare gift to have such a detailed understanding of something and this is where I think his future lies, in having that depth of knowledge on a certain subject. Let's hope its banking systems, or maybe music, but whatever it is, it doesn't concern me that he won't be able to hold down a job in the future.
Now, at the moment, as we gear up towards christmas, L has been asking for a Skylanders set for the Wii. He has been asking for this for about 18 months now, so we are going to let him have one. In order to prove to us though that he can handle it (bearing in mind previous comments about time on the computer and his very poor level of competitiveness) we have said he can have half an hour on his DS every day. Between us, my wife and I have also agreed that if he is naughty, this isn't something we will take from him - we feel he needs to play regularly in order to learn to control himself. It may be folly, but thats what we're trying at the moment.
Anyway, in a morning now, as soon as he wakes (about 3 hours too early for me, about 2 hours too early for my wife!) he is asking if he can have his DS time. We have two more rules in the house, firstly, no computers before breakfast, and secondly, no computers before school.
Having come off the back of the weekend, this second rule caught L a little by surprise and led to a tantrum. He has been struggling with the morning routine for the last few days though, hence my thought about the visual timetable.
What does amaze me though, rather wonderfully, is that as soon as he gets to school, he seems to be a wonderful young boy, and when he comes home he is happy and courteous and accepts when he is asked to come off his DS.
At the moment (and I am acutely aware that this is a time-limited offer), we have two L's. The first is struggling to get through the morning routine, the second is a typical happy boy.
So, until the next report of a playground incident, or a fight with his brother, or a tantrum in the early evening, I am happy to report that life is good. As long as it starts after 9am.
My wife and I have discussed it a few times over the last few months but never felt it was definitely necessary, but at the moment I think that perhaps it is time.
For the uninitiated, a visual timetable is just a row of pictures or words which tells L what to do and in what order. So for example, the first picture may be of him waking up, next its him going to the loo, then choosing his breakfast, then waking mom or dad up, then eating breakfast etc. etc.
L has a habit of becoming deeply obsessed by things, whether they be TV programmes, computer games, moshi monsters, anything. Once he is in an obsession then he rarely talks about anything else, sharing every last detail with us. Now, I don't have a problem with him sharing this with us - sometimes I encourage it. It is a rare gift to have such a detailed understanding of something and this is where I think his future lies, in having that depth of knowledge on a certain subject. Let's hope its banking systems, or maybe music, but whatever it is, it doesn't concern me that he won't be able to hold down a job in the future.
Now, at the moment, as we gear up towards christmas, L has been asking for a Skylanders set for the Wii. He has been asking for this for about 18 months now, so we are going to let him have one. In order to prove to us though that he can handle it (bearing in mind previous comments about time on the computer and his very poor level of competitiveness) we have said he can have half an hour on his DS every day. Between us, my wife and I have also agreed that if he is naughty, this isn't something we will take from him - we feel he needs to play regularly in order to learn to control himself. It may be folly, but thats what we're trying at the moment.
Anyway, in a morning now, as soon as he wakes (about 3 hours too early for me, about 2 hours too early for my wife!) he is asking if he can have his DS time. We have two more rules in the house, firstly, no computers before breakfast, and secondly, no computers before school.
Having come off the back of the weekend, this second rule caught L a little by surprise and led to a tantrum. He has been struggling with the morning routine for the last few days though, hence my thought about the visual timetable.
What does amaze me though, rather wonderfully, is that as soon as he gets to school, he seems to be a wonderful young boy, and when he comes home he is happy and courteous and accepts when he is asked to come off his DS.
At the moment (and I am acutely aware that this is a time-limited offer), we have two L's. The first is struggling to get through the morning routine, the second is a typical happy boy.
So, until the next report of a playground incident, or a fight with his brother, or a tantrum in the early evening, I am happy to report that life is good. As long as it starts after 9am.
Ros Blackburn
We had the pleasure the other week of spending an evening in the company of Ros Blackburn as she delivered a talk for local group of parents and teachers dealing with autism.
Ros Blackburn is severely autistic but makes a living from public speaking and should anyone get the opportunity to see her speak then I would certainly encourage you to.
Firstly, she is inspiring in that despite her autism (because of her autism) she has forged a living. She's not dead in a corner, she isn't in prison, she's a normal human being making a living. This is a particularly optimistic note.
Now during her talk she touched on something which I think applies to L. I should say that she is quite forthright in her views, especially that if a child can do certain things then they are most certainly not autistic. I disagreed with this but clearly she has a very clear, experienced and specific view point. The talk dealt with severe autism and conditions such as dyspraxia and aspergers syndrome. She doesn't really deal with the autistic spectrum, as per the title of this whole blog, she too sees the world in black and white which is of course perfectly understandable.
Anyway, she starts off by stating that she only knows what she is taught shown or told (again, I have no notes to reference so I may be paraphrasing). This means that, as she beautifully explained it, she has no gut to advise her. She can't rely on instinct to tell her what's right or wrong. She needs strict rules to follow otherwise she is stuck.
Consider for a moment the following sentences and what you would do for each...
"can you open the window?"
"can you speak French?"
"can you swim?"
You would perhaps respond to each question differently. An autist would instead refer to their internal rule book, perhaps deciding that "can you...?" means answer yes or no. Or, it may mean go do it please.
In my mind as she was explaining this I thought well why don't you clarify the question? I understood that the question is ambiguous, that "can you swim?" could be interpreted as go and find a swimming pool and jump in it and swim, and that there is no reference point in the autistic mind to try and figure out which is the appropriate response, but I still don't quite understand why you can't clarify the question.
I suppose this would mean clarifying everything - there must be so much that we take for granted that we understand, but how do we learn these things?
Anyway, the lack of a gut feeling certainly reminds me of L. Perhaps not do much in the misunderstanding but certainly in the need to have things examined, to prepare himself for what is about to happen. His reference points which most of us use - previous experience, mirroring the reactions of others, common sense - are all somewhat distorted and so he deals with things differently.
It is a testament to us that we manage this quite well with him.
Even if I do say so myself!
Ros Blackburn is severely autistic but makes a living from public speaking and should anyone get the opportunity to see her speak then I would certainly encourage you to.
Firstly, she is inspiring in that despite her autism (because of her autism) she has forged a living. She's not dead in a corner, she isn't in prison, she's a normal human being making a living. This is a particularly optimistic note.
Now during her talk she touched on something which I think applies to L. I should say that she is quite forthright in her views, especially that if a child can do certain things then they are most certainly not autistic. I disagreed with this but clearly she has a very clear, experienced and specific view point. The talk dealt with severe autism and conditions such as dyspraxia and aspergers syndrome. She doesn't really deal with the autistic spectrum, as per the title of this whole blog, she too sees the world in black and white which is of course perfectly understandable.
Anyway, she starts off by stating that she only knows what she is taught shown or told (again, I have no notes to reference so I may be paraphrasing). This means that, as she beautifully explained it, she has no gut to advise her. She can't rely on instinct to tell her what's right or wrong. She needs strict rules to follow otherwise she is stuck.
Consider for a moment the following sentences and what you would do for each...
"can you open the window?"
"can you speak French?"
"can you swim?"
You would perhaps respond to each question differently. An autist would instead refer to their internal rule book, perhaps deciding that "can you...?" means answer yes or no. Or, it may mean go do it please.
In my mind as she was explaining this I thought well why don't you clarify the question? I understood that the question is ambiguous, that "can you swim?" could be interpreted as go and find a swimming pool and jump in it and swim, and that there is no reference point in the autistic mind to try and figure out which is the appropriate response, but I still don't quite understand why you can't clarify the question.
I suppose this would mean clarifying everything - there must be so much that we take for granted that we understand, but how do we learn these things?
Anyway, the lack of a gut feeling certainly reminds me of L. Perhaps not do much in the misunderstanding but certainly in the need to have things examined, to prepare himself for what is about to happen. His reference points which most of us use - previous experience, mirroring the reactions of others, common sense - are all somewhat distorted and so he deals with things differently.
It is a testament to us that we manage this quite well with him.
Even if I do say so myself!
Being reborn
We have taken the decision to discuss L's condition with him. He has always been an intelligent young man and his issues mostly stem from frustration as a result of some kind of misunderstanding, so we decided to tell him about his condition and what it means.
He took the news with a typical stoicism which he seemed to take as an understanding of why he reacts differently to other people. It helped that we had a book to read with him called "so I have autism" or something like that (I realise I get these details wrong quite often, much to my dear wife's chagrin - if I am wrong on his occasion then I will come back and edit this post.).
It lead a few days later to a discussion which is heart breaking in a sense. L was asking about his autism and wondered if there was any cure.
"not that we know of I'm afraid, we just need to help you live with it"
"can I go back to being unborn and try again?"
Perfectly reasonable question I think, but when delivered with the logic and burning desire to change things, it was somewhat heartbreaking.
It was my wife who was asked so I tell this story from her perspective (and again likely with a load of details missing or wrong!) but it was nevertheless very affecting for us all.
He took the news with a typical stoicism which he seemed to take as an understanding of why he reacts differently to other people. It helped that we had a book to read with him called "so I have autism" or something like that (I realise I get these details wrong quite often, much to my dear wife's chagrin - if I am wrong on his occasion then I will come back and edit this post.).
It lead a few days later to a discussion which is heart breaking in a sense. L was asking about his autism and wondered if there was any cure.
"not that we know of I'm afraid, we just need to help you live with it"
"can I go back to being unborn and try again?"
Perfectly reasonable question I think, but when delivered with the logic and burning desire to change things, it was somewhat heartbreaking.
It was my wife who was asked so I tell this story from her perspective (and again likely with a load of details missing or wrong!) but it was nevertheless very affecting for us all.
The Diagnosis: Part 2
This week we finally received our formal letter confirming L's diagnosis on the Autistic Spectrum.
To say it's been a long time coming is an understatement and whilst I don't doubt the care that everyone has taken over the process, and of course the need to ensure it is right, there is clearly a problem with the beaurocratic process behind those giving the care which can be at best frustrating to parents, and at worst damaging to a child's education, welfare and wellbeing.
So, following on from my blog some time ago on our initial suspicions with L and the incidents which triggered our initial referral, I thought I would go through the rest of the process we went through.
Following L's week long exclusion from school as a result of a scratching incident - a reaction which seemed wholly disproportionate and out of the blue and which garnererd a strongly worded letter to the School Governors to which we yet await a reply - we were referred to a child specialist GP.
This was some 2 and a half years ago, around April 2010.
The GP we met, following an extensive search for an appointment with her, was very kind and after we described L's behaviour and following a short assessment of him herself, she asked us to complete a questionnaire. This was also sent to the school in order for them to submit their responses as well.
It took almost 6 months before we got to see her again - mostly due to delays from the school in replying to the questionnaire. In their defence, they did say they completed it and that it must have got lost in the post.
Following our second visit she referred us into the local Children's Hospital where we met with a specialist in Child Mental Health. This was January 2011. Again L was assessed, asked some questions, and we went through the situation as we saw it. We were very clear as to what the symptoms were.
At this time, L's behaviours were of the order of over-reacting, physically harming other children and generally being on a hair-trigger any time someone was in his space. He held no eye contact with anyone and did not play well with the other children at school. He would act selfishly, almost ignorant to the existence of other children when he was trying to do what he wanted. He did have friends, quite a few very close friends as well, and his social skills, whilst very specifically focussed on himself in an egocentric fashion, were there. One of the key facets of Autism is the social disengagement. The lack of a reference point to other people, and the inability to empathise. L did not exhibit this behaviour in a pure form, although it was clearly a part of his non-typical resopnses. This is part of the reason why there is an Autistic Spectrum, but also makes diagnosis very difficult.
There followed a series of meetings with the Educational Psychologist at school, with the Children's Hospital teams and with the specialist GP. Every meeting required us to chase up, ring and demand progress to be made. None of the meetings or appointments were coordinated or less than 3 months apart.
Eventually (probably around autumn 2011) we met with someone from the Family Support Service who acted in our interests. It was quite surprising having by this point spent 18 months bouncing around the system that actually someone was there to help us. And I am not referring to L, L was always in receipt of the best and most sympathetic of care and attention. Us as parents. Someone to help us navigate through the process, to chase up appointments, and to give us answers as to what should be happening next rather than being left to our own devices to guess and decide whether we were just being pushy or if actually we should have taken the next step by now.
It was shortly after this that the official diagnostic assessments took place.
This took the form of L being assessed by a specialist, with us the other side of a one-way mirror. I found the process intriguing and picked up how L was engaging with her in a number of ways, but then failing to engage in some other very specific ways.
A good example of one of the exercises to illustrate this point was when an imaginary sink was drawn on the table with the lady's finger. She explained where the taps were, where the soap was etc. Then she placed a sponge on the table.
She asked L to describe how he washed his face. Duly, L picked up the sponge and wiped his face. He was told to make sure there was water on it and duly pretended to turn on the tap. Next she asked him to brush his teeth, with no toothprush toothpaste or taps visible to start the process, L struggled. The difference was that the sponge acted as a literal trigger. Something he could hold. He could then imaging the rest of the bits. When asked to imaging the whole lot, he simply couldn't do it.
The result of this assessment was inconclusive. I recall the feedback we had with the assessor afterwards, how I highlighted these areas where L struggled and how it was reflected in how he behaved at home. Yet, it was inconclusive.
We continued our demands for an assessment and eventually, a few months later, we received a visit at home from the chair of the ASD assessment panel. She viewed L at home and a few days later at school. She told us afterwards that L was borderline from what she had seen, but what was clear was that the school were coping very well with L's needs and managing his behaviour well, and that without this, he probably was on the ASD spectrum.
So, now 3 months after the verbal decision was communicated to us following the meeting of the panel, we have the letter.
About bloody time!
To say it's been a long time coming is an understatement and whilst I don't doubt the care that everyone has taken over the process, and of course the need to ensure it is right, there is clearly a problem with the beaurocratic process behind those giving the care which can be at best frustrating to parents, and at worst damaging to a child's education, welfare and wellbeing.
So, following on from my blog some time ago on our initial suspicions with L and the incidents which triggered our initial referral, I thought I would go through the rest of the process we went through.
Following L's week long exclusion from school as a result of a scratching incident - a reaction which seemed wholly disproportionate and out of the blue and which garnererd a strongly worded letter to the School Governors to which we yet await a reply - we were referred to a child specialist GP.
This was some 2 and a half years ago, around April 2010.
The GP we met, following an extensive search for an appointment with her, was very kind and after we described L's behaviour and following a short assessment of him herself, she asked us to complete a questionnaire. This was also sent to the school in order for them to submit their responses as well.
It took almost 6 months before we got to see her again - mostly due to delays from the school in replying to the questionnaire. In their defence, they did say they completed it and that it must have got lost in the post.
Following our second visit she referred us into the local Children's Hospital where we met with a specialist in Child Mental Health. This was January 2011. Again L was assessed, asked some questions, and we went through the situation as we saw it. We were very clear as to what the symptoms were.
At this time, L's behaviours were of the order of over-reacting, physically harming other children and generally being on a hair-trigger any time someone was in his space. He held no eye contact with anyone and did not play well with the other children at school. He would act selfishly, almost ignorant to the existence of other children when he was trying to do what he wanted. He did have friends, quite a few very close friends as well, and his social skills, whilst very specifically focussed on himself in an egocentric fashion, were there. One of the key facets of Autism is the social disengagement. The lack of a reference point to other people, and the inability to empathise. L did not exhibit this behaviour in a pure form, although it was clearly a part of his non-typical resopnses. This is part of the reason why there is an Autistic Spectrum, but also makes diagnosis very difficult.
There followed a series of meetings with the Educational Psychologist at school, with the Children's Hospital teams and with the specialist GP. Every meeting required us to chase up, ring and demand progress to be made. None of the meetings or appointments were coordinated or less than 3 months apart.
Eventually (probably around autumn 2011) we met with someone from the Family Support Service who acted in our interests. It was quite surprising having by this point spent 18 months bouncing around the system that actually someone was there to help us. And I am not referring to L, L was always in receipt of the best and most sympathetic of care and attention. Us as parents. Someone to help us navigate through the process, to chase up appointments, and to give us answers as to what should be happening next rather than being left to our own devices to guess and decide whether we were just being pushy or if actually we should have taken the next step by now.
It was shortly after this that the official diagnostic assessments took place.
This took the form of L being assessed by a specialist, with us the other side of a one-way mirror. I found the process intriguing and picked up how L was engaging with her in a number of ways, but then failing to engage in some other very specific ways.
A good example of one of the exercises to illustrate this point was when an imaginary sink was drawn on the table with the lady's finger. She explained where the taps were, where the soap was etc. Then she placed a sponge on the table.
She asked L to describe how he washed his face. Duly, L picked up the sponge and wiped his face. He was told to make sure there was water on it and duly pretended to turn on the tap. Next she asked him to brush his teeth, with no toothprush toothpaste or taps visible to start the process, L struggled. The difference was that the sponge acted as a literal trigger. Something he could hold. He could then imaging the rest of the bits. When asked to imaging the whole lot, he simply couldn't do it.
The result of this assessment was inconclusive. I recall the feedback we had with the assessor afterwards, how I highlighted these areas where L struggled and how it was reflected in how he behaved at home. Yet, it was inconclusive.
We continued our demands for an assessment and eventually, a few months later, we received a visit at home from the chair of the ASD assessment panel. She viewed L at home and a few days later at school. She told us afterwards that L was borderline from what she had seen, but what was clear was that the school were coping very well with L's needs and managing his behaviour well, and that without this, he probably was on the ASD spectrum.
So, now 3 months after the verbal decision was communicated to us following the meeting of the panel, we have the letter.
About bloody time!
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