Monday 31 October 2011

Empowering parents to look for early warning signs

Not part 2 of the IEP post (still working on that) – instead a mention of something I’ve just come across.  Now I’m not trying to do a PR job for the state of Utah but I do think what they’ve introduced to help parents be alert for early potential signs of developmental delay is rather fabulous. 

Empowering parents – you can’t beat that J

In Utah, one in every nine children has a special health care need, chronic health condition, or disability. 

Wow – not only wow to the high numbers, but wow to the fact that they’ve actually bothered to count the numbers.  (UK government please take note!)  

In an effort to educate parents about childhood development, including early warning signs of autism and other developmental disabilities, the Utah Department of Health has launched the Learn the Signs. Act Early (LTSAE) campaign.

In addition to a new website, at that contains educational tools for parents, the state's campaign aims to provide developmental screening for every child at 18 and 24 months of age.

Screening at 18 and 24 months – yes please!  In the UK (so the NHS Choices web site tells me) we have two health and baby/toddler development reviews done by Health Visitors at 12 months and 24 months.  I would be interested to hear from any UK Mums whose babies have recently had one of these checks to find out what kind of questions are asked about the child’s developmental progress.  Warning signs will only be discovered if the Health Visitor asks the right questions and is aware of the subtle presentation of some of the symptoms of developmental delay – the Utah programme notes that conditions such as hearing and vision impairments, autism, and intellectual disability, can be identified early by watching for children to reach milestones like talking, walking, pointing, and responding when parents call their name.

My experience of raising concerns with my Health Visitor was that the concerns were quickly dismissed.  I got the impression that I was viewed as an over-anxious parent.  For sure, if I had known then what I know now about child development, our diagnostic journey would have been quite different.

“The site outlines all the milestones a child should achieve by each birthday,” said Al Romeo, RN, LTSAE program coordinator. “The site also tells parents what to do and where to go for help right away if they’re concerned about the way their child plays, learns, speaks, or acts.” 

Developmental milestones are available here:

He said the campaign is key, “because parents require knowledge about developmental milestones and early signs of autism for them to be good advocates for their children.”

Primary care providers across the state have been trained to incorporate developmental and autism screening in well-child care for all their patients.  The programme began with a baseline telephone survey in September and will end with a follow-up survey in the summer of 2012. 

The programme is being funded in Utah and 4 other states by the US Centre for Disease Control, which will incorporate the information gathered from the four launch areas before taking the campaign to other states.

Looking forward to the results…..hopefully other countries will also be able to learn from this programme.

Now back to what I should really be doing - practicing my presentation for the NAS conference on autism education next week.  Gulp.  My knees are knocking already...........

Friday 28 October 2011

The Individual Education Plan (IEP): blueprint for success or obstacle to progress?

I have been observing the process that schools and local authorities use to assess whether pupils have special educational needs (SEN) for some time now.  The process has always driven me crazy – I have found myself regularly answering the same questions about how to get a statement of SEN for a child with autism on internet forums and facebook groups, as well as in person.  I have also found that parents are generally getting stuck at similar points in the process.
Quick tour of the process in schools in England for those of you not familiar with it:
·         Special educational needs (SEN) are suspected, so the school introduces measures that are ‘additional to’ and ‘different from’ those used to support the majority of the child’s peers to learn.

·         ‘Additional to’ and ‘different from’ measures don’t result in progress, so the child is placed at ‘School Action’ and more intensive measures are used.

·         Child fails to make progress at School Action so is moved to School Action Plus (SA+).  At SA+, advice is sought from external professionals (e.g. Speech and Language Therapist, Educational Psychologist) to influence the development of new targets and new strategies to meet need.

·         Child fails to make adequate progress at SA+, so the school makes a request for a statutory assessment.  If statutory assessment finds that the child’s needs cannot be met from within the resources available to the school, a statement of SEN is agreed.
Throughout this process, the mechanism for monitoring and reviewing progress is the Individual Education Plan (IEP).  The IEP should underpin the process of planning intervention for the individual pupil with SEN.  It should focus on up to three or four key individual targets and should include information about:
§         The short-term targets set for or by the pupil
§         The teaching strategies to be used
§         The provision to be put in place
§         When the plan is to be reviewed
§         Success and/or exit criteria
§         Outcomes (to be recorded when IEP is reviewed).

Recently Dixon and I found ourselves supporting a local Mum of 3 girls, two with Asperger’s Syndrome.  The elder of the two had been at School Action Plus for eight years.  Yep – eight years. 
I submit to you, m’lud, that eight years is not a reasonable time for a child to remain at School Action Plus.  Either the child makes progress (hmmmm….’progress’….we’ll come back to that one) and is downgraded from School Action Plus to School Action, or does not make progress and so a request is made for a statutory assessment.
The parent who we were supporting had made repeated representations to the school regarding statutory assessment but these had all been turned down.  The view of the school seemed to be that the child’s needs weren’t severe enough to warrant a statutory assessment (groan…..the old Asperger’s Syndrome myth again….) 
In fact, during this time, the child had been signed off school by her doctor for a year.  Whilst at school, she had been known to faint on several occasions, and Mum reported that at one time, her daughter was regularly vomiting in the morning before school.
After some discussion and consideration of options, Mum decided to make a parental request for statutory assessment.  Parents can do this at any time - our experience is that most parents don't know that this option is available to them.  A meeting of relevant professionals was convened by the local authority to collect the information required to make the case for statutory assessment.  Dixon accompanied Mum to the meeting and helped her to ensure that all the relevant paperwork was submitted in support of her case.
We won’t know the outcome until mid November….we are hoping that the child will be given a statement and that the local authority will agree with Mum’s view that the only local school that can meet her daughter’s needs is Bright Futures School.
What has stood out for me in this is what chimes with the experience of other families I have encountered who were in a similar position – that it is often the inadequacy of the IEP and the failure of the school to monitor progress that are the blocks to statutory assessment .
Parents are at the mercy of the school here.  If I had a pound for every time I’ve heard parents say the school told them that their child wouldn’t get a statement, I’d be on my way to bailing out the Eurozone.  And I don’t think I’ve ever seen a good IEP…….isn’t that just woeful?  No wonder so many of our kids aren’t getting their needs met appropriately.  Most parents don’t know the system, they don’t know their rights, and they don’t know how to hold the school to account. 

Generally you wouldn’t know how to do any of that unless you’d been through it… parents are in a cleft stick.
In order to help un-cleave us, Dixon and I (who have now been through several versions of it) are in the middle of writing a parent-friendly paper that discusses how to hold schools to account via the IEP, as well as how to make sure the IEP is meaningful and measurable.  I’ve just joined Google Plus and I think it has a document sharing facility, so will see if I can get it on there once it's finished (I guess that could be some time, knowing me and techno.......)
In my next post, I will share an example of a poor IEP and then share some thoughts on what a good IEP might look like.  
Meanwhile, here is the latest offering from the NNNJ kitchen – our ‘not Jamie’ chicken pie from Jamie’s ‘Meals in 30 Minutes’.

Thanks to this recipe, and to his participation in the cooking, Louis (above) is now eating mushrooms (which were in the sauce).........the NNNJ kitchen works its magic on typically developing kids as well J This one didn’t work for Philip, but hey, you can’t win ‘em all.

Friday 14 October 2011

Ely and Mum Laura

Here is a real treat for you – another guest blog, this time from my friend Laura, with some amazing footage of her son, Ely, showing where he was before they started working on social communication and emotional regulation through RDI, and where he is now.  Over to Laura………..
When Ely was four years old he was given a diagnosis of autism. No mention of ‘high functioning’ or “a little bit on the spectrum”.  Just plain old pot spinning, non verbal, hand flapping and not toilet trained autism.  If it sounds harsh, it was. We could not leave the house, we had hours and hours of screaming. We lost friends, we lost hope.
 Like all good parents, we consulted with the experts.  In other words we searched the internet! Days, hours and weeks were spent researching all the various sorts of treatments, and eventually we stumbled on RDI. It seemed like the only thing that made sense; the choice seemed to boil down to behavioural interventions - or RDI. My instinct told me to go with RDI, so I did. Honestly, I went kicking and screaming to it. I knew I was desperate for someone to help my beautiful son, but felt that there was a whole world out there of people willing to take my money, playing on my desperation. In the end, I listened to my heart, and took a leap of faith.
That leap of faith, gave me my son back. RDI turned out to not be an easy road.  When I started I didn’t understand that it meant that I did not hand him over to a therapist to fix. It was a shock to find out that I was going to be supported to remediate his autism, that I was going to have to do it.  A shock to find out that I was going to have to learn some things to help him and spend many hours with him working on this.
But the greater shock, to find that with all the work, my son started to change. RDI pushed the autism away, and I started to see my son again. It is hard to describe the changes, I often think of it in snapshots. Three years ago you would have walked into my home and seen my son probably sitting on the floor spinning objects. If he spoke to you it would have been in repeated phrases that did not connect to anything you might say. If you stayed for more than a few hours you may have seen him dissolve into one of his many meltdowns.
Today, if you walked into my home, you would see Ely and his siblings running around. He would be joining in with their games. If I called out dinner time, he would rush to the table and sit with his siblings. He would join in the general chat of the day.
Ely still has autism. But autism no longer has him. He has many challenges ahead, but RDI gave me my son back.

I know I speak for my readers when I express our gratitude to Laura for sharing her family’s story with us – thanks Laura J

More information about Relationship Development Intervention (RDI) at

Saturday 8 October 2011

Emotions and thinking - an old married couple

Ok am going to try just to do a quick post here (hmmmmm....I'm not known for short posts - I may well be deluding myself)

I dont know why I haven't blogged about this before as it's a significant piece of research by Jessica and Peter Hobson.  You'll remember Jess from my previous post.  Husband Peter wrote 'The Cradle of Thought'......a dynamic duo if ever there was one :)  And just lovely, lovely people.  We are so lucky to have these guys in our corner.

'Emotional Regulation In Autism: A Relational, Therapeutic Perspective'

The study results so far were presented at the International Meeting for Autism Research in May this year.

Looking at how emotional regulation in children with autism can be improved as the result of the parent-child interaction that is fostered during RDI, the research concludes: 'Treatment approaches which focus on interaction between children with autism and their caregivers have the potential to affect the children’s emotion regulation abilities which, in turn, are likely to influence other areas of emotional, cognitive, and social development.'

Those of us using RDI with our kids know this to be true already....bring on the next phase of this research :)

Employing a well known method used in attachment studies to measure the quality of parent-child interaction (Dyadic Coding Scales: Humber & Moss, 2005), the study showed that the kids with autism who had been in RDI had outcomes scores similar to typically developing children in the areas of: Coordination, Communication, Partner Roles, Emotional Expression, Responsiveness/Sensitivity, Tension/Relaxation, Mood, Enjoyment.

Yes that's right - scores similar to those of typically developing kids.

Assessment of the pairs of children and parents (dyads) was videotaped, and later coded for qualities of relatedness by blind, independent judges, which introduces objectivity into the evaluations.

What we know about stress levels and emotional health in children with autism and their families

Some of what we know is captured in these pretty dire facts and statistics:
  • Gulsrud, Jahroni and Kasari (2010) illustrated how toddlers with autism showed high levels of distress and negativity. The greater these emotional difficulties, the more stress reported by their parents, and the more difficult parents found it to manage their children’s distress.
  • Green (2004) reports that the parents of autistic children were almost twice as likely as other parents to have scores on the General Health Questionnaire (GHQ-12) indicative of an emotional disorder (44 per cent compared with 24 per cent).
  • Sharpley, Bitsika and Efremidis (1997) found that 81.9% of parents of ASD children reported that they were sometimes stretched beyond their emotional limits, and nearly half of these felt that way monthly or even weekly.
  • In contrast to other types of disabilities, parents of children with autism appear to be at greater risk for depression, anxiety, social isolation, fatigue and frustration in obtaining accurate diagnoses and services. Indeed, Bouma and Schweitzer (1990) found autism to contribute more to family stress than did cystic fibrosis (NAS Information sheet, 2005).
  • And then there is my all time favourite - that Mums of children with autism who present with challenging behaviour experience stress levels similar to those of combat soldiers.
Anyone who has ever been mad or anxious about anything knows that when you get mad or anxious, your ability to think clearly and rationally becomes impaired.  In the 'mad' scenario, the amygdala takes over and the 'fight' response kicks in until we regulate our emotions sufficiently for the pre-frontal cortex to get back in the driving seat.  In the 'anxious' scenario, the amygdala produces the 'flight' response.  Emotions and thinking are inseparable - like an old married couple.
We can therefore see how it is likely that the next stage of this research will demonstrate that improved emotional regulation leads to improved cognitive and social development.  Just think of all those families out there whose quality of life could be radically improved, by simply altering the way they interact with their kids.  No chemicals or pharmaceuticals, no aversive therapies.  Exciting!!