Testing

A-One and I have finally completed his practice and baseline tests using CogStateTM.  For him to have had sufficient sleep it usually means he's free in the afternoons, but I'm not always free then.  In my attempts to co-ordinate our schedules I'd occasionally hear faint mumblings of ... 'not important' ... but, in the end, he submitted relatively graciously.

To administer the tests I was required to read the instructions while they were also presented to him on the screen.  For the practice tests, he usually read ahead and pressed on without waiting for me to finish the instructions.  Except the working memory tests - he read and re-read them before proceeding.

For the baseline tests, because they are timed and should be done without significant breaks, I asked him if he needed a glass of water or to use the toilet before we started.  He decided he did.

An hour later (sigh) we got started.

Again I read the preparatory instructions, reminding him that the tests were the same as the practice tests, just different in the specifics so that they are still 'fresh'.

Mum: Are you ready to start?

A-One: Not yet.  I'll let you know.

A minute or so passed.

Mum: Are you ready yet?

A-One: No.  I'll let you know when I am.

A minute or so passed.

Mum: How about now?

A-One: No. Not yet.

Mum: Are you composing yourself, getting your mind ready for this?

A-One: Yes.

The first baseline test was to remember a shopping list.  As I started to read out the items, he burst out, 'Aren't these meant to be the same words as before?'  So we used up some seconds as I explained that the test is the same, but the words are different.  That's what the 'composing' time had been about - trying to remember the words from the practice test!

For most of the tests again, he pressed on without waiting for me to finish reading the instructions, except for the more challenging of the working memory tests.  We completed all the tests in about an hour and fifteen minutes. My observation, supported by the test results, showed that his working memory is quite good. When tests required that he 'work out' a rule or find a path in a maze, he performed better than when he had to remember many things short term.  But for anything that had made it into his memory, his delayed recall was then good.  This is consistent with our experience of him - it might take a while for something to get into his brain, but once it's there, it's there forever!  So it sounds to me like he would benefit from practising learning things off by heart - not so much to know many more things, but to practice the learning technique required to remember things.

Mum: Do you want to see your test results?

A-One: Nah.

Pondering the good working memory results, and recalling that his previous neuro-psyche tests indicated a weak working memory, I asked him if he was willing to do a little exercise that would take only a minute (a working memory test).

Mum: I'll give you five numbers and I want you to repeat them back to me - backwards.

A-One: OK.

Mum: 7    3     9     5     8

A-One gazed down with a look of concentration on his face.  After about 15 seconds he looked at me and giggled.  He looked down again for about another 10 seconds.  Looked up, giggling again.

Then, tumbling the numbers out in quick succession:

A-One: 85937!

CogState

An article on SharpBrains referred to using a battery of online cognitive tests developed by CogStateTM, an Australian company based in Melbourne, listed in the top five in SharpBrains' Market Report.

When I had previously looked at CogStateTM's website I had noted that their target markets were primarily for testing cognitive capacities in the aging (Alzheimer's) and sports (concussions), clinical trials for pharmaceuticals, as well as use by academic researchers. I hadn't pursued it at the time because I hadn't thought that the work I was doing with A-One fitted any of those categories.

However, following on from my thinking in The Challenge blog, I wrote to CogStateTM several weeks back making an enquiry about the use of their tests. I was looking for an economical way to independently assess cognitive progress using Lumosity, or CogniFit, or any other online brain training.

Much to my excitement, CogStateTM has offered me the use of their Research battery of tests for 12 months!  This will enable me to take an independent baseline of A-One's cognitive capacities now, and to periodically check how he's going as he continues his training. I'm hoping that it will also help me better target the training that A-One requires.

I checked with A-One whether he was willing to undertake the tests.

A-One: How long will they take?

Mum: Each test takes between a few to several minutes, and there are about a dozen tests. Doing the tests would take perhaps an hour, but the total time would probably be longer than that as you would need to learn what each test entails.

A-One: OK.

So far, so good. No resistance.

I downloaded the software yesterday.  The software comes with a research manual which I have been reading and I'm now training myself in how to administer the tests.

I'm also putting on my thinking cap about how to gather others similar to A-One so that he has some fellow travellers wishing to improve their cognitive capacities. CogStateTM has told me that I am free to use the tests for such a group.

I hope I can keep A-One as excited about this as I am!

The Challenge

A few days ago I was reading a SharpBrains article about whether brain training really works, and read with interest my own burning question: 'how to max­i­mize the like­li­hood of trans­fer from train­ing to daily life.'

One of the conditions is that it must target a bottleneck. 'For instance, if you need to train your exec­u­tive func­tions but use a pro­gram designed to enhance speed of pro­cess­ing, you may well con­clude that this pro­gram does not “work.” But this pro­gram may work for some­body whose bot­tle­neck is speed of pro­cess­ing ...'

Bingo.
This is the area where I have been looking lately for some professional assistance.  Where is the user's guide to online brain training, so that someone can pick the right brain training exercise for their specific area of impairment?  Even the jargon for describing cognitive capacities seems to vary between sites, or is too general, so it's not always clear which exercises match A-One's specific deficits.


To this end, I have contacted some organisations to raise the possibility of combining professional expertise with online brain training, not for general brain fitness but specifically to improve cognitive deficits, just as I am trying to do with A-One.

For example, the co-ordinator of a 'brain gym' for brain injured soldiers at Walter Reed Military Hospital in the US presented at SharpBrain's Virtual Summit last year. She described how they use readily available brain exercises based on peer reviewed neuroscience, delivered via various media - online, mobile device apps, Nintendo etc - combined with standardised neuropsych evaluations to help soldiers rehabilitate their cognitive capacities after an injury, so that it is evidence based.

It seems to me that A-One could benefit from working with others seeking to improve capacity in their areas of cognitive deficit, where each person's brain exercises are targeted to their individual bottlenecks.  I think he would benefit from the social aspects of meeting with others, as well as increased motivation to keep working at it.

I keep coming back to the initial assessment phase of the Arrowsmith program and the classroom environment for delivery, and why that has been so successful. Could there be something similar for readily available, and inexpensive, online brain training?

So I'm running a few parallel paths of activity at the moment:

• I'm contacting support organisations for people with learning disabilities or developmental or neurological deficits, with a view to joining with other parents and practitioners who have an interest in brain training to see what we could get happening for group training, especially for adults with average or above average intelligence with cognitive deficits.
• I've contacted TAFE to discuss what would be needed for TAFE to deliver the Arrowsmith program
• I have been raising awareness of the educational implications of developments in neuroscience, and the Arrowsmith program in particular.  For example, Coursera have recently announced their Continuing Professional Development program for Teachers which includes a course called The Brain-Targeted Teaching® Model for 21st Century Schools from Dr. Mariale Hardiman at John Hopkins University. I've alerted the Learning Support teacher at my daughter's school to this, and she is raising it with the school's senior admin. I also sent a link to my contact at TAFE, and the Australian Arrowsmith program as it may be a useful supplementary professional development course for teachers involved in this year's pilot in Sydney.

Plateau'ing is normal

Today we looked at A-One's brain training scores over the last week. He seems to be playing about three to four times a week at present.  His scores are still at a plateau; he's now at 42.7th percentile overall.  However his Flexibility has been showing a steady increase, now at 48.2nd percentile.

Mum: I was reading in the Lumosity blog that plateau'ing is a common pattern when learning something new, and that sometimes sharp rises can occur and then be sustained.  That's certainly been your pattern, A-One.  The important thing is that you keep doing it, because your brain is working on it even though it doesn't seem to show in your scores right away.

A-One: Well, I didn't have internet for some days.

Mum: But you do now, so you should play today to catch up.

A-One: Yes, I will.

Perhaps he has been encouraged by his test report.  I haven't managed to get him to try CogniFit yet.

He's a Sharpshooter!

I was listening to a 'Founder Story' of Mike Scanlon, Lumosity's Chief Scientific Officer today.  He made reference to a broader cognitive test that Lumosity members can use every few months to see how their cognitive capacity is going as distinct from how well they are performing in the brain exercises.  (Note: It doesn't seem to work with IE 10, but does with Chrome.)  I can't find a link from the Lumosity website, but I had an email record of the URL from my initial inquiry to Lumosity.

I can't recall why I didn't get A-One to do it initially because that had been my plan.  Perhaps I had thought that limited levels of co-operation were better directed to the actual brain training.

Today he was willing enough to do it.  His test results tell him that his strengths are Speed and Attention. Problem Solving is rated above Memory which is his weakest, even though Memory is his area of strength in the actual exercises and Problem Solving his weakest. The report notes that Attention is good for driving. Imagine that! For a boy who had been told all his life that he needs to be kept on task,  had been on ADD medication for a while, and last year told by the neuropsychologist that he shouldn't get his drivers licence.

I love the encouraging way the report is presented and the smile on A-One's face when he read it: A-One, you are a Sharpshooter! Quick, observant and incisive.  You easily take in information and use penetrating insight to make quick decisions.  With a keen sense of spatial orientation, people with these strengths make natural athletes and navigators.   His overall score also put him in the 'about average' range for people in his age range.

(Would WOW also have something to do with this?)

Mum: See A-One, I think for someone who has your capabilities, it's criminal that you're not out there working or learning an occupation.  And you should be playing to your strengths - get to the gym three times a week!  or Tae Kwon Do or Roller Blading. I'm happy to take you.

A-One: I'd like to go to gym.

Mum: Great.  What time of the day do you want to go - and it should be at least 3 times a week.

He's still thinking about that one.

Mum: For someone who is decisive, it shouldn't take too long for you to make a decision about that.

A-One: I don't think I'd do very well at TAFE, because I struggle with the theory.

Mum: Don't base all your decisions on what you were good at, or not, at school.  Remember all this brain training is to enable you to do those things.  It's not because I'm 'into it' that I'm getting you to do brain training.  It's to make it possible for you to do those things that you are interested in!

A-One: OK.

CogniFit

I've just had a good look at CogniFit.  And it's fun. I saw it referenced in a Friends of SharpBrains LinkedIn discussion.

It's also in SharpBrains list of vendors to watch in 2013/14 and is based on peer reviewed research, although mainly for aging adults. It includes some very interesting features:

• You can register for free and get some free 'neurons' which is like a currency
• You can do an assessment first up to get your profile of cognitive strengths and weaknesses as well as how you compare with others in your age range
• Cognitive abilities are described at quite a granular level e.g. not just Memory, but working memory, short-term memory, contextual memory
• You can earn more 'neurons' by training and 'unlock' new games by spending your neurons, or you can purchase more neurons (with real money) to play more
• You can bet your neurons to win more
• You can challenge other players
• The training is tailored based on your assessment
• It's fun

I hadn't investigated this site in depth before because it's pitched to keeping your mind agile as you age, but I think it would be really good for A-One - especially if we can get some other players for him to play with.  It seems to have incorporated the appeal of online multiplayer games e.g. like WOW and the chance of notching up your 'neurons' to play more.

I'm pretty excited about it as it seems to include a number of features that I've been looking for in relation to A-One, in particular the assessments which can be done at any time, the increased granularity of cognitive abilities including planning, the ability to choose specific games for these, and the ability to play with and challenge others.

I've done several training sessions today and have not had to pay any real money. 

(I started using my mouse left-handed several years ago, mainly to ease some tension that had been developing on the right side of my neck from a highly stressful job.  But for these games today I quickly switched to my right hand because the speed challenge sucked me right in!)

Now the hard part is gaining A-One's willingness to try it.

Coping with a change in disability employment service provider

Even though it was Sunday yesterday, A-One did his Lumosity training.  He had been reminded by his father, and didn't protest that it was the weekend.  However, he hasn't yet done his training today.

He's still plateau'ing in his scores, so no change much yesterday.  No information processing or working memory games, but he gained another PB again for the cafe game (familiar faces). He's really strong on that one.

 

This morning we attended an appointment with a new disability employment service (DES) provider, specialising in intellectual and learning disability, the only one in Queensland.  We have the usual hoops to go through, as we did a couple of years ago, including a Job Capability Assessment (JCA) at Centrelink next Monday. 

 

While his previous DES provider was good too, I was keen to try this new one due to their specialty. This one had been recommended to me by someone at the workshop I attended at University of Queensland last year.

 

A-One: Do you think the other DES people will think badly of me for changing? I don't want them to think badly of me because they were OK.  Sometimes they'd give me a lift to the bus stop, or even drive me home.

Mum: I expect they may be disappointed in losing a client, and I don't want to leave on bad terms either.  We'll give them a courtesy call to thank them for all their help, and tell them that this new service specialises in disabilities like yours, so we'd like to try it.

I'm glad that A-One is tuning into interpersonal aspects. I've seen him make similar comments when contemplating changing guilds in WOW too.

ESCoNS Cognitive Neurotherapeutics - a new field of gaming

A-One seems to have reached a plateau in his Lumosity brain training over the last couple of days, sitting at overall percentile of  31.9.  His games have included information processing and working memory on most of the last three days with several PBs on Wednesday.  However, yesterday (Thursday) he achieved a PB for Penguin Pursuit! This is the speed game where he complains that the penguin is cheating because it goes faster than he can. Nevertheless he completed level 15 of the game, and commented that he hasn't cracked level 16 yet.

Through SharpBrains I was alerted to an exciting symposium happening at the University of Southern California, Los Angeles this month. It's the second annual conference and meeting of The Entertainment Software and Cognitive Neurotherapeutics Society.  The press release states that it fosters collaboration to advance development of video game therapy to diagnose and combat mental disorders and improve cognitive learning, brain capacity and function. 

The society seems to have developed the whole new and exciting field of “cognitive neurotherapeutics.” What got me really excited was that the founder of the society is a past Executive of Activision Blizzard which publishes World of Warcraft!  So that means that there are others who recognise the potential of combining the disciplines of good game design with neuroscientific brain training!  It makes me feel hopeful about the increasing availability of online brain training exercises.  We just need to ensure that it's clear how to assess which games address which cognitive dysfunctions.

Speak to me of love ...

Another conversation this morning about making brain training a priority.

Mum: Get on to your brain training this morning so that I can write it up and then my day is clear for other things.

A-One: Can't I just tell you when I've done it?

Mum: I'm the busy one, and I need you to work in with me so that I can plan my day.

A-One: I don't have to do it to suit your convenience! You don't have the authority to tell me when I have to do it.  (Doesn't he have great verbal skills?)

Mum: Well, yes I do. It is a requirement of living in this house that you complete your brain training by 10am every day.  

A-One: You don't say things like that to your immediate family!  Maybe to others, but not to me, and I don't see you saying it to .. (A-One's sisters).

Mum: Your brain training is that important! Successful people decide what are the top 1-3 things to do every day, and don't let other things get in the way - they make time for the important things first!  I'm trying to show you successful life skills.  I've given up work so that I can work with you or find something to help you.  I have made this my top priority.  (I felt tears rising) it's because I love you A-One, not because I want to make your life difficult. I've researched this work, and you will have to give me the benefit of the doubt about its value.

A-One: Okay.

On reading this, those who subscribe to a self-directed learning philosophy may squirm. It's clear what my priorities are for A-One, what about his? They may ask, how is that respectful of him? Yet our experience of A-One is that he lacks initiative. He lacks the capacity to translate an abstract goal into real concrete steps, and from what I have read, I think this passivity is one of his cognitive impairments. Last year, the neuropsychologist told us to be directive in taking positive steps.  She commented that waiting for him wasn't working, was it?

In the end, we want him to know he is loved, and our drive (and frustration) comes from there.

 

His scores today were similar to yesterday; speed was down, but the others were OK. A couple of new games.

As we looked at his scores, I explained to A-One the importance of two types of games based on his previous capability assessments: information processing and working memory. We looked at the games available, noting those that exercised these capabilities. I told him that if the program doesn't serve up these games to him, he needs to add them in as 'extras' every day.

Time will tell whether I've got through to him for just today, or for the days ahead too.

Global market report into digital health offerings

I have just received the latest newletter from SharpBrains, an inde­pen­dent mar­ket research and think tank track­ing health and pro­duc­tiv­ity appli­ca­tions of neu­ro­science.  In my assessment they are strongly backed by academics, and have a long list of professional articles listed on their blog, including one by Barbara Arrowsmith-Young on why she wrote The Woman Who Changed Her Brain.

They report on fully automated applications designed to assess, monitor and/ or enhance cognition and brain functioning.  Even though the report is available for purchase, they provide an overview which includes a list of the top vendors worldwide.  Some of the sites I'd discovered so far are listed:

• Lumos Labs is listed in the top five
• the Arrowsmith program is listed first on the list of Service-based Companies
• CogMed is listed in the list of companies to watch in 2013/14

I find it encouraging that my research has identified some quality offerings. 

Of course, my challenge has always been which programs are the right ones for A-One's specific cognitive impairments, so that his efforts in brain training translate to real improvements in his quality of life.

An online service and other links

Last night I was following up some of the organisations represented at Friday's workshop at UQ.  A partner of Synapse is The Developing Foundation based on Brisbane. It provides a link to neuro-developmental therapy programs which include online consultations and assessments.  The site refers to brain neuroplasticity and lists experience with developmental delay, global developmental delay, and PPD-NOS.  There appears to be a great deal of alignment between the online therapy programs and my objectives - do they also incorporate online brain training?

An Australian researcher into Autism, from Macquarie University in Sydney, blogs at Cracking the Enigma.  Macquarie also hosts the ARC Centre of Excellence in Cognition and its Disorders (which doesn't list UQ as a collaborating or partner organisation.)  More leads to follow up.

Objectives: Best Practice AND Online

On Friday I attended an all-day workshop at the University of Queensland for Research Officers working in NGOs. Its purpose was to build capacity for research in the Human Services NGO sector, through building relationships between the University's researchers and the service providers/practitioners in the Human Services sector.

I don't work for an NGO, however my interest was to discover more about how research works in the Human Services sector, access to funding for research, and how that might be applied so that specific, targeted brain training becomes more accessible.

I found it a very worthwhile day, meeting people working in the NGO sector and researchers from UQ.  In particular I met people from Synapse, the not-for-profit association supporting people with acquired brain injury (ABI), and the Centre of Excellence for Behaviour Support from UQ (based in Ipswich).




The latter is funded jointly with the Queensland Government to improve the quality of life for adults with intellectual or cognitive disability and challenging behaviour.   This group has developed a framework for developing a comprehensive research agenda for people with intellectual disability and challenging behaviours.  I learnt that the focus of this group is on positive behaviour support, especially for people with severe intellectual and cognitive disability. It sounded like it would be a stretch for that group to turn its attention to those with mild cognitive impairment.  However, the framework for developing a comprehensive research agenda may be a good base from which to start in developing a research agenda for people with milder cognitive impairments.

Based on what I learnt from the workshop, I have drafted my own vision to improve the services available to people who fall between the cracks of 'normal' cognitive ability and severe cognitive disability. How many people are on the disability pension, possibly on supported wage, who with some effective intervention to overcome their cognitive impairments, could move into gainful employment and eventually off, or receive reduced, government support?

My two objectives are:

Objective 1: Evidence-based brain training exercises become incorporated into best practice treatment options for cognitive impairments

Objective 2: Evidence-based best practice cognitive assessments and correlated brain training exercises become more widely accessible through online delivery



I have begun developing the compelling 'why' for various stakeholders:

• People with cogntive impairments
• Carers
• Human Services Providers/Practitioners
• Health Care Practitioners/Specialists
• Educational Services
• Government - Political
• Government - Administrative
• Employers/Business
• Community/Society

Also the How? and the Who?

I learnt that evaluation (efficacy) measures need to be determined collaboratively to incorporate user, practitioner, and researcher perspectives.

...

I wasn't at home on Friday, so no brain training happened for A-One, despite his insistence that I don't need to be there while he does it. 

Met Barbara Arrowsmith-Young this morning

My husband and I attended a breakfast talk by Barbara Arrowsmith-Young in Brisbane today.

Barbara's talk reinforced to me that the strength of the Arrowsmith program when compared to online brain training is that the Arrowsmith program is carefully focussed on a person's weak cognitive function, keeping it isolated from cognitive strengths which might compensate.  Whereas online brain training is likely to be more general.

I also found the talk very worthwhile in meeting some people in Brisbane who have an interest in this area, including those who have a special interest in any adult programs.  I came away with some business cards to follow up, as well as an Arrowsmith Parent Adocacy Guide - to gain support from schools to implement the program.

Again I came away convinced that evidence based research and results will be important to brain training programs becoming more mainstream.

A glimmer of hope ...

In May of this year, a good friend emailed me referring me to a recorded Radio National radio interview with Barbara Arrowsmith Young , thinking that there might be something in it that could help A-One. I had heard about Barbara because she was 'Chapter 2' in Norman Doidge's book The Brain that Changes Itself about the neuroplasticity of the brain. At the time I had thought there may be something in this to help A-One, but daily life and work commitments took over at the time.

When I listened to Barbara's interview, she said something that made me sit up and take notice: she had had difficulty reading analogue clocks. I knew someone else who had difficulty with that: A-One was fine with digital clocks, but he always needed to check if he was reading analogue clocks correctly.

I started to look into this further. I emailed the Arrowsmith School in Canada. At the time I asked whether they have anything available online, or even better whether they were collaborating with any games developers. Imagine the possibilities if brain training was built into highly addictive games like World of Warcraft! All those despairing parents of especially teenage boys who spend hours and hours playing games - what if all that game playing could improve their brains!

As it turned out, the Arrowsmith school does not have an online offering, but they sent me their Principal's pack. As I read through it, I mentally checked off the list of impairments for which they have developed exercises: A-One's OK at that, OK at that, OK at that, THAT'S A-One!, OK at that, OK at that, THAT's A-One! From my mother's inexpert eye (I'm not a professional educator or psychologist - my background is in ICT), it sure seemed to me that here were some exercises that could help A-One. And the Arrowsmith school has been using brain training to help people with cognitive impairments for 30 years!

At the same time, members of my husband's family had been reading Barbara's book The Woman who Changed Her Brain and in knowing A-One, had also thought that there could be something in this that could help him. As I read the book myself, I thought this is the closest thing to A-One I'd ever read, and seemed to fit him more than any of the therapies that we had done with him in his early life.

Barbara's writing was inspirational and brought me to a deeper level of compassion and insight for my son.



I sensed that the planets were aligning. Fairly recently, the opportunity arose for me to cease full-time employment (at least for a while), so I am about to embark on a program of brain training with A-One, and to assist in whatever way I can to make brain training more accessible in Brisbane to help people with cognitive impairments.

Cognitive Impairments

Our A-One is friendly and socially engaging.  However he has some cognitive impairments. The following summarises the results of his recent tests:

Average

vocabulary

general knowledge

literacy skills (reading and spelling)

 

Low Average
verbal reasoning
visual observation
planning, organisation, spatial/perceptual
numerical reasoning
auditory attention span
auditory working memory

Impaired
processing speed (he has always needed to be kept on task)
complex thinking

Summary
A significant discrepancy between language/communication and literacy skills and applied skills i.e. planning/organisation, speed of initiating and completing timed tasks, complex thinking/reasoning tasks
Oh... and don't get a drivers' licence

Assessments

With our growing concern at the prospect of long term unemployment, earlier this year we took A-One to a neuropsychologist for some vocational guidance. She did some assessments with him, which essentially validated the same impairments that tests had revealed when he was 12 years.

At that time he was diagnosed with Pervasive Development Disorder - Not Otherwise Specified(PDD-NOS) at the mild end of Austistic Spectrum Disorders (ASD). To me that seemed to mean 'I Don't Know', so it wasn't very helpful to us in finding appropriate help, although we had done speech, physio and occupational therapy with him when he was little.


Nevertheless the educational psychologist working with him when he was 12 did some emotion face recognition work with him, and helped him with strategies to respond to bullying.

Today, I think he is sensitive to others' emotions and can respond to them, but not necessarily with a great deal of nuance.