Autism Understanding Term 3 2014 Newsletter

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NDIA, DSM-5 autism severity levels, ASPECT Youth Group, Autism resources, Fragile X Syndrome & Fetal Alcohol Spectrum Disorder

Term 3 2014

Dear Lydia Meem,

I hope things are going well for you.  This year I've been enjoying seeing clients for assessments, counselling and behaviour support as well as running workshops for teachers and psychologists in Canberra, Melbourne, Adelaide and Newcastle.  I'm looking forward to running more workshops in Brisbane, Sydney and Perth this term.  Here are some of the latest topics and resources I've been discussing with clients, families, teachers and allied health professionals lately.  

Lake Macquarie Local Government Area joins the National Disability Insurance Agency (NDIA) Trial

From 1 July 2014 residents with disabilities living within Lake Macquarie Local Government Area (LGA) can apply for funding through the National Disability Insurance Agency.  The Hunter Trial has been running in Newcastle LGA from 1 July 2013.  Residents of Maitland LGA will be included in the Trial from 1 July 2015.  Residents of all other NSW LGAs must wait until the scheme is introduced nationally in 2018.  To see if you or your child may be eligible for NSIA funding, you can complete the questionnaire at My Access Checker on the NDIA website.  You will need to complete some demographic questions and then some questions about the level of support you or your child needs when engaging in a range of daily activities.  Remember to compare your child with other children the same age and to rate based on their worst days, not their best ability in that area.  Prompting or reminding someone to do a task they wouldn't otherwise think to do (even if they can then do it independently) counts as support.  Take into account any visuals or other behaviour supports you use in your everyday routines.  

DSM-5 Autism Spectrum Disorder - Does my child need a reassessment?

You may be aware that in May 2013 the American Psychiatric Association updated their diagnostic manual for mental illnesses and developmental disorders (called the Diagnostic and Statistical Manual of Mental Disorders).  The new Fifth Edition is known as DSM-5, and replaced the previous DSM-IV-TR.  It's important to remember that people with autism and Asperger's haven't changed, we've just gone from a grey book to a purple book for diagnostic criteria.  The main difference for diagnosing autism in the new edition was a move away from having many different labels for autism (Autistic Disorder, Asperger's Disorder or High Functioning Autism, Pervasive Developmental Disorder - Not Otherwise Specified or Atypical Autism, Rett's Disorder, and Childhood Disintegrative Disorder) and replacing these with one name for autism, Autism Spectrum Disorder.  Everyone who was previously diagnosed with one of the many labels above is free to keep their original diagnosis (and to continue to call themselves Aspies if they choose), but going forward newly diagnosed individuals will receive the diagnosis of Autism Spectrum Disorder.  

Statements you may have heard like, "Asperger's no longer exists" can be misleading.  People with Asperger's Disorder did not wake up one morning in May 2013 to find that they no longer had social communication difficulties, a need for sameness and routine, rigid literal thinking, highly specialised or intense interests or repetitive behaviours like rocking, pacing or sorting things by colour.  The "end of Asperger's" refers to the DSM-5 move away from making diagnostic distinctions between people who met criteria for Asperger's Disorder (autism without an intellectual disability and without a speech delay/disorder) versus High Functioning Autism (autism without an intellectual disability, with or without a speech delay/disorder) versus Autistic Disorder (autism with or without an intellectual disability, with or without a speech delay/disorder).  This change has occurred because the research showed the autism in Asperger's was the same autism as in High Functioning Autism or Autistic Disorder.   This change may pose a problem for people who were told (not by me) "Don't worry, it's not autism, it's only Asperger's", which is really the diagnostician trying to avoid the stigma around the label of autism.  We need to reduce the stigma around autism, and part of that is recognising the full range of individuals on the autism spectrum, including many extremely talented and successful people (i.e. Bill Gates).  

As autism is a lifelong condition, it is not necessary for children who have already been comprehensively assessed and diagnosed with autism to undergo another full diagnostic assessment using the new DSM-5 criteria.  However some services are requesting an 'update' of the individual's diagnosis using the DSM-5 criteria for the purposes of eligibility for funding or a specific program.  This may occur when the original report was completed several years ago, or if the original diagnostic report or letter did not provide enough information to demonstrate how the individual meets the criteria (i.e. some practitioners may write a brief letter stating that a child has autism, without detailing the method of assessment and identifying specific behaviours observed or reported in the clinic, at home and at school).  In some cases a full autism assessment is requested to clarify these issues.  

I have also heard of students with a diagnosis Autistic Disorder, Asperger's or PDD-NOS losing aide funding until they can provide evidence that they have Autism Spectrum Disorder, and not Social Communication (Pragmatic) Disorder for which there is no funding.   Social Communication Disorder (formerly known as Semantic-Pragmatic Disorder) is a communication disorder affecting social skills and non-verbal communciation, without other features of autism like repetitive behaviours, restricted interests and sensory sensitivity.  If the original autism diagnostic report details repetitive behaviours, restricted interests and/or sensory sensitivities, then Social Communication (Pragmatic) Disorder should be easily ruled out. 

I tend to include lots of information in my diagnostic reports so a full diagnostic reassessment should not be necessary.  So if someone asks you to get an 'update' on your child's diagnosis, check what information they need and why.  Ask whether a brief letter stating that the individual still has autism (i.e. now meets DSM-5 criteria for Autism Spectrum Disorder) is sufficient, whether we need to include information about their current support needs if these have changed from last time, or whether they need a full diagnostic assessment.  

NDIA and DSM-5 Autism Spectrum Disorder Severity Ratings

DSM-5 makes provisions for three severity ratings for Autism Spectrum Disorder based on the level of support the individual requires.  It is possible to have one severity level for Social Communication, and another severity level for Restricted, Repetitive Behaviours.  Alternatively diagnosticians can choose to give an overall severity level, or to not specify a severity level.  An individual's support needs can change over time and given different circumstances, so it should be possible for the severity rating to be updated as needs change over time.  

Initially I was unsure what various funding bodies would do with the severity levels in terms of eligiblity for programs and funding.  I thought it would be safest to avoid using the severity ratings until it became clear what impact this would have on service provision.  Therefore I have been giving the DSM-5 diagnosis of Autism Spectrum Disorder without specifying a support Level required, but including specfic recommendations about supports required in the diagnostic report.

Recently I have been advised by NDIA planners that individuals with a DSM-5 diagnosis of Autism Spectrum Disorder, Level 2 "Requiring Substantial Support" or Level 3 "Requiring Very Substantial Support" will automatically be deemed eligible for NDIA funding. Individuals with a DSM-5 diagnosis of Autism Spectrum Disorder Level 1 "Requiring Support" will need to demonstrate further evidence of need to be deemed eligible for NDIA funding.  

If I have diagnosed you or your child with Autism Spectrum Disorder but haven't specified a Level in your diagnostic report you may like to have the Level clarified for NDIA funding purposes.  We can do this via a brief  covering letter to NDIA which you can attach to your diagnostic report.  If I have diagnosed you or your child with one of the DSM-IV-TR autism diagnoses described above, I am happy to provide a covering letter updating the diagnosis to Autism Spectrum Disorder and stating the DSM-5 Level to ease the NDIA eligibility process.  If you are applying to NDIA and would like this covering letter please contact Kim Greenwood on 4967 3363.  

If you or your child have been diagnosed with Autism Spectrum Disorder or one of the DSM-IV-TR autism diagnoses described above by another professional, and you are seeing me for counselling or a behavioural consultation, we can write the covering letter for NDIA updating the diagnosis during your next consultation.  Of course if you are questioning a diagnosis made by another professional and would prefer a second opinion on whether you or your child now meets criteria for Autism Spectrum Disorder, we can arrange a full diagnostic assessment.  

Teen's Place: ASPECT Youth Group, Charlestown

I have heard great things about ASPECT's social program for high school students with autism spectrum disorders.  It is held on Friday evenings at The Place: Charlestown Community Centre.  For more information, please contact Craig Smith on 4922 5900.  

First Signs Videos: Online Training Videos for Professionals and Families

First Signs Inc and Florida State University have developed a great resource for families and professionals interested in the early signs of autism.  They have compiled a number of videos of young children with and without autism to demonstrate the subtle developmental differences that can indicate an autism assessment is necessary.  The First Signs Video Glossary can be accessed by anyone (they will ask you to register, but it's free).  You can view the videos on the website, but you can't download the videos as they belong to Florida State University and First Signs Inc.  If you want to use the videos in a presentation they are happy for you to show them by logging in through their website.

Resources for Girls on the Autism Spectrum

Recently psychologist Tania Marshall released her first book, I Am Aspiengirl, describing the characteristics of autism spectrum disorders in girls and women.  This beautiful and funny photo book includes quotes from girls on the spectrum and their parents.  It includes a section where girls can write about the characteristics that make them unique.  There are also profiles and web links for a number of adult 'Aspiengirls' who can be seen as role models for girls on the spectrum, having achieved success in their particular areas of interest.  Tania is planning two further books, "I Am Aspienwoman" and "AspienPowers", which can be preordered on the Aspiengirl website.  

Speaking of role models for girls on the spectrum, I am a fan of Victoria Hammond, who has specific interests in music and make-up, and has made a series of Youtube videos on Aspergers.  Her How to Make and Keep Friends video showing how much effort and analysis she puts into social interactions, and the tendency for people with autism to become obsessed with certain people.  Even though she finds friendships challenging, Victoria remains positive and inspiring.  Go Victoria!  

Conversation Train book

I love Joel Shaul's new book, "The Conversation Train: A Visual Approach to Conversation for Children on the Autism Spectrum".  It uses kids' love of trains to engage them in talking about how to start a conversation, keep it going, stay on topic (track), switch topics (tracks) appropriately, and end a conversation.  It has photos of a train set to explain how different carriages represent different parts of the conversation.  At the end of the book are a series of worksheets that can be used with individuals or as part of a lesson or social skills group.  For those who aren't ready for writing, there's a colouring-in sheet of each carriage.  

Ant Patrol Children's Stories

Dr Deberea Sherlock (Psychologist) and Aisling Mulvihill (Speech Pathologist) have written a series of six books for children aged between six and eleven years who are experiencing delays in their social and emotional development, including children with high-functioning autism and ADHD.  "Stay in Line" and "Mind on the Job" focus on impulse and attention control, "Pick Your Moment" and "Name of the Game" focus on social awareness and perspective taking, and "Seeing Red" and "Fear Factor" focus on self-calming and coping skills.  The books are available separately or in a set on the Ant Patrol website.  

Fragile X Syndrome and Autism

We know that autism and intellectual disability can run in families, but in the majority of cases, we are not yet able to identify a genetic cause for autism or intellectual disability.  For example research suggests that a specific genetic cause for autism is currently identifiable in only about 1% of individuals with autism. Of the known genetic causes of autism, Fragile X Syndrome is the most common.  Fragile X is also the most common of the known genetic causes of intellectual disability.  

There is quite a lot of overlap between the symptoms of Fragile X and autism.  There are some physical features associated with Fragile X but these are not always easily picked up in young children.  The best way to diagnose Fragile X is with a blood test.  

The Fragile X Association of Australia encourages individuals with autism and/or intellectual disability to be tested for Fragile X.  In the majority of cases, this allows Fragile X to be ruled out as a cause of the autism or intellectual disability.  For those who are identified as having Fragile X syndrome, it can be helpful to test other family members to see if they may be carrying the Fragile X genetic mutation, as this may impact on their future fertility planning and decision-making (i.e. they may choose to use IVF for egg donation to avoid passing on the mutation).  Family members who are carrying the Fragile X genetic mutation can also have health problems of their own, including Fragile X Tremor Ataxia Syndrome (FXTAS) which can be confused with Parkinson's, and Fragile X Primary Ovarian Insufficiency (FXPOI) which can be confused with premature menopause.

For those interested in genetic testing to rule out Fragile X syndrome, it is important to ask for the "FMR1 DNA Test", also known as the "Fragile X DNA Test" (the blood collection vial will have a purple lid).  This is more accurate than the older Fragile X Chromosome Test.  For more information about genetic testing, ask your GP, paediatrician or Hunter Genetics.  

Fetal Alcohol Spectrum Disorder

I have the privilege of working with a number of foster families with children with developmental disabilities.  These children may have experienced trauma or neglect before being placed with their foster family.  In some cases drug and alcohol use was a concern during the pregnancy, and it may help to explain the developmental delays and the persistence of these delays after intensive intervention.  There are some facial features associated with Fetal Alcohol Spectrum Disorder (FASD), but not all individuals display these signs.  I have referred a number of families to Professor Elizabeth Elliott (Paediatrician, Westmead Children's Hospital), who is an expert in this area.  If you would like more information about Fetal Alcohol Spectrum Disorder, please contact the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD).  

Kind Regards,

Lydia Meem

Clinical Psychologist, Autism Understanding Pty Ltd

Ph: (02) 4967 3363

Email: autismunderstanding@gmail.com

Web: www.autismunderstanding.com.au 

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