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Frequently Asked Questions (FAQ)

Hi everyone,

Here's a selection of the emailed questions I often receive and my responses.  Hope this is helpful.  If you have any other questions, please don't hesitate to call my lovely secretary Kim Greenwood on 02 4967 3363 for more information.  

Thanks,

Lydia

Q: Hi, Thanks for indicating I could contact you to ask questions.  Could you explain to me again the distinction between Asperger's and Autism?  I have ordered the children's book you recommended but I notice it's title includes Asperger's and I want to ensure I don't confuse my son when I explain his diagnosis and use the right term for what he has.  

A: Hi, Asperger's is autism without a speech delay and without an intellectual disability.  Asperger's Disorder was one of the names for autism in the old diagnostic criteria, the DSM-IV.  In May 2013, the DSM-5 came out and it has one name for the full range of autism, Autism Spectrum Disorder.  The DSM-5 uses the levels of severity to describe whether people are in the deep or shallow end of the autism swimming pool.  Your son isn't in the deep end, but he's got enough autism that using the autism strategies will make a difference.  Everyone who previously had an autism diagnosis under DSM-IV, including Asperger's Disorder, automatically qualifies for a diagnosis of Autism Spectrum Disorder under the new DSM-5 criteria.  Books written since 2013 will say Autism Spectrum Disorder, whereas older books will say Asperger's Disorder or High-Functioning Autism for individuals like your son.  As time goes on, there will be more community awareness of the full range of presentations in autism, including very successful individuals, so there will be less stigma around autism and the distinction between Asperger's and autism will be less important.  

So if you're reading a book about Asperger's, you can explain that Asperger's is a kind of autism, and there are lots of smart, quirky kids out there like your son.  If it's easier for you to tell people that he has Asperger's than to tell them he has autism, that's fine.  If you want to explain that Asperger's is a kind of autism, that's fine too.  I had to write Autism Spectrum Disorder in the report so that you can access funding, as the funding bodies like NDIA and school want the DSM-5 wording for the diagnosis.  That doesn't mean that people won't talk about Asperger's anymore.  Many adults on the autism spectrum identify as having Asperger's and call themselves "Aspies", which they are free to do.  I can't use the term "Aspies" because I don't have Asperger's so I'm not in the club.  

When you're explaining to your son, the main thing is to normalise it, so I explain that everyone is good at some things and needs help with other things.  For example I was good at the academic stuff at school, but terrible at art and music and sport.  I'll keep listing things I needed help with until I see that gleam in the child's eye that there's something they're better at than me.  Then I'd explain that he is great at some things (i.e. his special interests) but needs help sometimes with other things (i.e. making and keeping friends, dealing with noise) and there are people who are happy to help him with those things (i.e. you, his teacher, me, an occupational therapist).  Then see if he has any questions and go from there.  The main thing for your son to know is that he's not sick or broken or dumb.  He just thinks a bit differently to some people, and we need all kinds of minds, so that's perfectly okay.

Here's a link to a video on how to tell kids they have autism or Asperger's https://www.youtube.com/watch?v=KWjbnVQ_z8E and another one of my favourite videos with a teacher talking to kids about their diagnosis, and how their diagnosis is just a part of them, not all of who they are https://www.youtube.com/watch?v=8HW7TRJU7PM.  

Take care, Lydia

Q: Hi, Thanks for easing us through the diagnostic process for our son and talking us through where to go next and behavioural strategies to try.  We wish he'd been diagnosed earlier and had access to early intervention, but at least we know what to do now.  Is there anything we can do to meet and help other families on this journey?

A: Hi, thanks, and what a great question. I can't speak for other families, but I know of many families who support each other through formal and informal networks, chatting at preschool and school, via Facebook groups, joining email lists, online forums or by attending parent support groups like Hunter Connect, Strive or My Time.  There are also sibling support groups like movie nights, ten-pin bowling and camps where kids can get together and have fun with other kids who know what it's like living with a brother or sister with autism or another disability.   

If and when you feel up to it, you may be interested in participating in research so that we can all learn more about autism and how best to improve the lives of individuals with autism and their families.  I have a list of Research Opportunities for You to Participate In from various Universities and organisations, but don't feel any pressure to participate in research projects.  Only you know whether it's right for you and your family, and if you are able to fit it in amongst all the other demands on your time.  Researchers are happy to discuss what their research involves and you can always withdraw at any time.   

Regards, Lydia

Q: Hi, I was really excited about the National Disability Insurance Agency (NDIA) trial in the Hunter, but my experience with it so far has been clunky at best.  How can I appeal the decisions made by my planner or give feedback so others can have a better experience?

A: Hi, thanks for sharing your experience.  You are not alone.  As you know the NDIA system is new, so there are likely to be some teething problems.  It's really important to share any tips you have on improving the system so that NDIA can get it right for you and your family, and for others going forward.  NDIA lists several pathways for communication on their Feedback, Complaints and Reviews webpage.  Where it suggests you contact your local NDIA office, the Hunter office in Charlestown's phone number is 4942 9200 and their email address is charlestown@ndis.gov.au.  You can also call their national phone line on 1800 800 110.  If you are unhappy with the first response and want to speak to a manager, let the person you are speaking with or emailing know that you need a manager to contact you to discuss the matter further. There is also an Independent Evaluation Team for NDIA through the National Institute of Labour Studies at Flinders University. Their flyer explains how you can be involved, and you can sign up for emails about the evaluation project on their website.   

NDIA's data identifies that 25% of their clients have autism and 20% have an intellectual disability, so it's really important for individuals with autism and intellectual disability and their families contribute to the debate and planning process around the NDIA roll-out across Australia.  On the 28th and 29th August there will be an event called "Getting the Best from the NDIS - Making it work for People with Intellectual Disability" at Panthers Newcastle in King Street.  It costs $20 for people with an intellectual disability, $50 for family members and carers, and $350 for professional providers and community members.  There will be speakers from a variety of organisations, and forums for comments and questions.   

With a view to lobbying for better services from NDIA for individuals wth autism, Autism Awareness Australia has launched a national survey of parents and carers of children and young adults on the autism spectrum "to get a clearer picture of what autism support services look like in Australia and identify gaps that currently exist in helping families provide better care, education and support for their loved ones with autism".  The Autism Awareness Australia survey will be open until Friday 12 September and takes less than 10 minutes to complete.  They will publish the results of the survey on their website in early October. 

Regards, Lydia 

Q: Hi, I've just attended your workshop for psychologists and school counsellors.  I share your passion for early identification and diagnosis, and for evidence-based interventions tailored to the needs of individuals with autism and their families.  How do I take my knowledge and practice around autism to the next level?  Do you provide clinical supervision?

A: Hi, great to hear from you and thanks, I'm flattered by your interest in clinical supervision. Unfortunately I'm not able to offer clinical supervision as I'm flat out seeing clients and running workshops.  However I am happy for you to observe me doing an ADI-R or ADOS assessment if the family consents to you sitting in.  That way you can see how I work and decide if you want to go ahead with the intensive training in those assessment tools.  I have links to the Australian ADOS and ADI-R training providers on my Links to diagnostic videos and resources page

If you are interested in learning more about how children and adolescents with autism present during cognitive and developmental assessments, you might be interested in participating in my own research questionnaire for Australian psychologists.   It is aimed at identifying behaviours and response patterns displayed by children and adolescents during assessments including the WPPSI, WISC and Griffiths, in order to develop a future screening tool so that children can be referred on for an autism assessment earlier. 

Another great option is the Asia Pacific Autism Conference (APAC), a 3 day event held every 2 years.  The next APAC will be held in Brisbane from 9-11 September 2015.  You can join the APAC 2015 email list to be notified of the conference details once they are available. 

Regards, Lydia 

Q:  Hi, My partner has not been assessed for Aspergers but he has a lot of Asperger traits. I have a LOT of trouble communicating with him, he is very literal, can't read between the lines, can't understand/process what I am saying. I have been told I'm a good communicator and this has been so frustrating for me. Is anyone available for counselling? 

A: Hi, I'm happy to meet with you and your partner for counselling.  If you'd like to book in some appointments, perhaps a month apart, please call my secretary Kim Greenwood on 4967 3363.  Unfortunately there is a wait as I am quite booked up.  In the meantime, you might like to read "22 Things a woman must know if she loves a man with Asperger's Syndrome" by Rudy Simone.  There are links to booksellers from the My Favourite Resources, Books & Sensory Toys page on my website.  You might also be interested in the links to videos on my Adults with Autism & Asperger's page of my website, especially the interviews with Rudy Simone and Louise Weston.  You may also be interested in investigating the following support groups:

  • ASPIA – Asperger Syndrome Partner Information Australia (Burwood, but provides information to partners outside of Sydney), Carol Grigg 0432 507 828 info@aspia.org.au, Illawarra/Shoalhaven ASPIA group: Sylvia 4295 7327
  • Families of Adults Affected by Asperger Syndrome, www.faaas.org
Regards, Lydia
 
Q: My daughter has ADHD, ODD, depression, anxiety, and is self harming. She sees a psychiatrist but he does not offer therapy, which she really needs to help her deal with these issues. This has now become very urgent as this week she tried to OD on panamax. The doctor at the Emergency Dept felt that this was something that could have been avoided if she had ways of reducing impulsive urges. Can you help us?
 
A: Hi, Certainly I can help you and if you contact my secretary Kim Greenwood on 4967 3363 she can book in some appointments for you.
 
In the meantime please contact the Child and Adolescent Mental Health Service (CAMHS, ph 4925 7800) in King Street Newcastle for advice on crisis strategies and a medication review.
 
Also your daughter's school counsellor may be able to provide interim strategies until I can see you later in the year. You can obtain a mental health care plan from your gp to help with the cost of psychology sessions or try Medicare Local for bulk billed sessions. I would try mindfulness combined with some sensory calming strategies as well as self esteem building and challenging negative thoughts she has about herself, but I would need to hear more about the triggers to tailor strategies to her needs.
 
I would also be interested in her understanding of her diagnoses. Often kids and adolescents will assume they are dumb or crazy if we don't share their diagnoses with them in a positive way.
 
If she is able to verbalise what she was thinking at the time of the overdose that will help you to reframe those thoughts and find other ways of dealing with those emotions. Some people report that they need to use another strong stimuli to block out the pain they are feeling in the moment so holding ice cubes or punching a punching bag may be a safer way to gain control or feel more alive than taking tablets or cutting or burning.  Not all self harm is suicidal. It may be she was upset about a particular incident that can be handled differently in future. There may have been a build up of events leading up to an incident that was the last straw.
 
It is important for her to have at least five people, preferably adults, that she can ask for advice if she is distressed again and to carry those phone numbers or email addresses with her. If she is upset with you perhaps there is a friend of the family, a preferred teacher, Kids Helpline (1800 55 1800), or LifeLine (13 11 14) that she can call.
 
Strategies that reduce overall stress levels will depend on the source of stress, but may include backing off from homework and engaging in fun activities that release energy and get the endorphins flowing (like swimming, jumping on a trampoline, riding a bike or attending a zumba class). She may not feel like doing those things now but encourage her to try them as she may enjoy them once she gets started.

Hope this helps and I look forward to meeting you both in a few months.

Regards, Lydia
 
Q. Hello, I am a kids yoga teacher, and I am extremely interested in learning more about working with children with ASD. I would love to offer specialised classes for children with such disorders. Would your Brisbane workshop be suitable?  Looking forward to hearing from you soon. Thanking you,
 

A: Hi, You would be very welcome at our Brisbane teachers workshop. Certainly there are lots of strategies you will be able to apply in a yoga class. There is a huge need for disability friendly after school activities so I am sure you will have no trouble filling the class if you let the local support groups know about it. Hope to see you in Brisbane.

Regards, Lydia

Q. Hi Lydia, I attended your workshop for teachers last year.  My daughter has PDD-NOS. I am having a hard time with my daughters school trying to get them to understand her. She is different to other girls and the girls exclude her terribly.  I am struggling with strategies also. I had a meeting with her teacher and she has asked for strategies too. I have looked over and over your website but I cannot find any resources on PDD-NOS. Also the school counsellor has told me that PDD-NOS is not under the ASD banner. Based on your workshop I understand that it is now under the ASD banner. In any event my daughter is feeling very lonely and gets physical symptoms of being sick in her stomach everyday at school. She will also cry frequently and at night. I'm just wondering if you have any resources on PDD-NOS from a parents point of view and also from a teachers point of view. She was diagnosed with a language delay and sensory issues when she was in Kindy and her Psych and Paed gave her a PDD-NOS diagnosis. She had extensive language and OT therapy privately until both her Speech Pathologist and OT told us they felt she was ready to stop having therapy. Her main issues are not behavioural but mainly the ability to connect and maintain friendships. Thank you kindly.

A: Hi, I remember meeting you at the workshop. I'm sorry to hear you and your daughter are having trouble with school.  It is true that the label of PDD-NOS is no longer being used in the new DSM-5 diagnostic system, but your daughter should now fit within the Autism Spectrum Disorder label, unless she only has difficulty with social communication and doesn't have any need for sameness, reliance on routine, repetitive behaviours or restricted interests or sensory sensitivities.  As you have been seeing an occupational therapist I suspect she would have a history of at least some of the above (often kids with autism have repetitive behaviours at 4 to 5 years of age but lose these once they get to school or only display them at home).  If it is a social communication difficulty only, then she may meet criteria for Social Communication (Pragmatic) Disorder under the DSM-5, which is similar to the Semantic Pragmatic Disorder in DSM-IV-TR.  I suspect that Social Communciation Disorder will not have funding attached, whereas Autism Spectrum Disorder should.  

In terms of a diagnosis if you find that you really need the autism label for the school, I am coming back to your city this year so could see you for a reassessment then if that suits you.  Alternatively if you needed something sooner, we could do the ADI-R as a phone interview or Skype interview.  If you wanted to discuss that further, please contact my secretary Kim Greenwood on 02 4967 3363 or via email at kim@ajwmilesandson.com.au  There are Medicare rebates available for clinical psychology.    

In terms of strategies, I would use the same strategies for children with PDD-NOS as I use for children with Aspergers.  There are several videos on social skills on my website that your daughter may be interested in.  She may relate to Victoria Hammond, a teenage girl with Aspergers who talks about making and keeping friends and gives step by step instructions on how to approach people, dealing with obsessions with a certain person etc.  You may also be interested in Tess who was diagnosed with PDD-NOS.  Her video is called "Anxiety in School", and involves a reward program to keep her motivated and on task. They mention in the video that children on the autism spectrum need reward breaks because the usual breaks (recess and lunch) are hard work rather than a rest for kids on the autism spectrum.   

Your daughter may prefer to join in structured activities at lunchtime with clear rules rather than unstructured chatting with peers who can be nasty or insensitive at times.  You may like to look at the Sixth Sense II Presentation by Carol Gray as a possible lesson plan for letting your daughter's peers know about how to support kids who find social situations difficult.  You can ask if the teacher can do this presentation with your daughter's class, with or without her (she could be sent on an errand).   I find kids will be accommodating if we show them what to do.  Another thing I have heard works in some schools is a friendship circle or a friendship tree in the playground where any kids can go if they don't have someone to play with.  They can then talk with each other, and the playground duty teacher can monitor that space and help link those children in with groups.  The playground duty teacher then rewards kids who invite kids from the tree or circle to join in their games.  

It sounds to me like your daughter is internalising her anxiety, which leads to stomach upset, constipation etc.  You and her teacher may like to start using a Stress Scale Thermometer (based on the Incredible 5 Point Scale) to help her to identify how she is feeling and ways she can relax when she is feeling stressed or sad/lonely.  You may also like to try one of the 'How are you feeling?' charts with photos or drawings of emotions.  I like the Emotional Check-in Check-Out Stage 1 worksheet available on the Do2Learn website as it has photos of people showing each emotion.  If she doesn't relate to the photos of other people, she may relate to photos of herself showing these emotions.  

She may enjoy sensory activities to bring down her general stress levels, like jumping on a trampoline, swimming, bike riding, as well as sensory or fidget toys/jewellery that she can use at school to manage her anxiety.  Girls can often get away with sparkly or textured bracelets, lip balm or scented hand cream and sensory hair ties that she can touch.  Similarly she may like chewy pencil toppers or a chewy pendant if she tends to bite on her clothes or herself.  I have some examples of these on my website under "My Favourite books, tools and sensory toys".  

Another thing is to follow her interests and meet friends through these interests, even if they are online friends, she may feel more comfortable speaking to people who share her interests.  Of course you need to supervise her use of the internet as she is likely to take people at their word and not realise they may be posing as someone else.  Make sure she knows the rules about not giving out personal information like her last name, school, age or address.  If she doesn't have a lot of interests, I would suggest an after school activity like ten-pin bowling where you can be on a team but everyone has individual scores and there is a visual prompt to let you know whose turn it is and to help you remember everyone's names.  If she is not interested in team sports like netball, she may enjoy Guides or another non-competitive group. 

You may also like to join a support group for parents of children on the autism spectrum.  Other parents or your state's Autism Association will be able to let you know of local services and social opportunities for kids on the spectrum.  

You may like to let your child's teacher and school counsellor know about my upcoming workshops in case they are interested in discussing more practical strategies.  Kim can email you a copy of the flyers for these workshops.  

Thanking you,

Regards, Lydia

Autism Understanding

Lydia Meem-s

Lydia Meem

BA (Psych)(Hons), MPsych(Clin), MAPS, CClin Clinical Psychologist and Founder of Autism Understanding Pty Ltd Lydia specialises in helping families recognise the joys and overcome the challenges of autism by tailoring behavioural strategies to suit the needs…
About Autism, Aspergers - autism assessment, autism workshop, psychology, psychologist

About Autism

The term Autism Spectrum Disorders (ASD) is used to describe a broad range of social, communication and behavioural difficulties experienced by children, adolescents and adults. Some people with autism find it hard to negotiate the unwritten rules of social…

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