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Please can you help an OT doctoral student completing autism research

We have been asked to help Jamesdean Visley a student at Huntington University find parents of children with ASD to take part in a survey.

Huntington University - Autism Research

Huntington University – Autism Research

My name is Jamesdean Visley, and I am currently a student at Huntington University’s Entry-Level Doctorate of Occupational Therapy Program, Class of 2017. My research group and I are conducting a survey pertaining to how occupational therapy education for caregivers of children with Autism Spectrum Disorder (ASD) is carried over from the clinic, into the home. The title of our research is “Caregivers’ Perspectives on Occupational Therapy Programs for ASD.”

Our goal is to bridge the gap between occupational therapy services received in the clinic to continuing those activities at home. We hope to gain an understanding of what aspects of occupational therapy education parents find effective, and what changes they would like to see happen. We greatly appreciate your time in taking this brief survey, and encourage you to forward to any other families that have children with ASD who are receiving occupational therapy services.

The link is below:

https://www.surveymonkey.com/r/caregiversperspectivesonOTprogramsforASD


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Selective mutism – find out more and share your story

As many of my readers will know by now I am the father of a nine year old boy with classic autism. Our ASD journey has opened my eyes to a number of different but , in some ways , related conditions of behaviours. From example last week we looked at Fragile X Syndrome. Today I would like to focus on Selective Mutism.

Affecting about 1 in 150 children Selective mutism (SM) is an anxiety disorder that stops children speaking in certain situations, for example when they are in school or out and about in public.

But they are able to speak to family and their friends when nobody else is listening. So for some children on the autism spectrum Selective Mutism can be a symptom.

As the UK’s NHS say “the child is not voluntarily refusing to speak but is literally unable to speak, feeling frozen. In time, they learn to anticipate the situations that provoke mutism and do all they can to avoid them.”

As with autism many children learn to cope and overcome a lot of the problems created for them by SM. However they will often be more reserved than their peers.

To help raise awareness of Selective Mutism we are sharing this great infographic produced by Kathryn Harper. You can read here blog post on SM here. Harper’s blog is one of the best sources of information on SM and is very well worth a read. That being said if you know of any good links please do share in the comments box below.

It would be great if you could use the comment box to share your Selective Mutism story. Anything you have to say is of great interest but you might want to focus on the following questions:-

a) Is it you or a family member with SM?
b) At what age did SM appear?
c) What therapies were employed and how well did they work?
d) What was the long term impact of Selective Mutism?
e) What advice would you give to a family where they has just been a diagnosis of Selective Mutism.

Thanks very much in advance for your help.

Selective mutism infographic

Selective mutism infographic

Baby Steps - The Journey of A Lifetime

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Fragile X – the most common genetic cause of Autism . Find out more here!

Having spent the last six years of my life very closely involved with the autism community I often cannot see the wood because of the large forest surrounding me. Let me explain. Out son, John, has moderate ASD – indeed his autism has been described as “classic”. You know the sort of thing all the triad boxes ticked.

Which means that I have often ignored other types of autism and similar conditions on this blog.

Well today I want to rectify this. In this blog post we would like to focus on a condition related to autism called Fragile X Syndrome. They are related in so far as around 50% of children with FXS also have a diagnosis of autism. So I’d like to share the brilliant infographic below. If you could share it on I would be very grateful.

As you may know Fragile X Syndrome which is also known as Martin–Bell syndrome or Escalante’s syndrome is the most common genetic intellectual disability. According to most figures it affect 1 in 4,000 boys and 1 in 6,000 girls. Around 50% of people with FXS will also have a diagnosis of autism. There are also high rates of ADHD within the Fragile X community.

That being said one of the best ways of increasing awareness, acceptance and understanding of a condition is to get people to share their stories. It would be great if people with FXS or their loved ones would consider telling your story in the comment section below. Anything you would like to share will be of great interest but you might like to consider the following question:-

a) Do you have FXS or what is your relationship to a person with Fragile X Syndrome?
b) What were the earliest signs and symptoms of Fragile X Syndrome?
c) What treatments and therapies were used and how effective were they?
d) How many people in your family have Fragile X?
e) What one bit of advice would you give to a family who discovered they were carrying FXS?

Thanks very much for your help and can we ask you to share this blog post and infographic once again?

Fragile X Infographic
Fragile X Inforgraphic by the National Fragile X Foundation – See more at: https://fragilex.org/2013/foundation/fragile-x-infographic/#sthash.toNC99S0.dpuf

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Autism and technology – how touchscreen technology has helped in the research and therapies for autistic people

As many of my readers know I am the father of a nine year old boy with ASD. One of the things about him ( and there are many) was the ease with which he has taken to using computers and especially tablets with touchscreen technology. As I see it it provides a huge amount of liberation for him and gives him the ability to both relax and develop which he would not otherwise have had.

Bear in mind the past century developments in technology have given us new methods of treatment and research in healthcare. This infographic show how touchscreen technology, in particular, has helped and study of the autism spectrum. It also show how touchscreen technology might be used by autistics in the future.


The Power of Touchscreen Technology: A Timeline of the History of Technology in the Treatment of Autism.

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Autism and Music – What are the facts and how effective is music therapy for autistic people?

Some fascinating facts about autistic people and music.

A few years ago I found myself at a party where one of the hosts was a doctor.

So unsurprisingly many of the guests were also physicians. The subject of autism came up (can’t remember how) and he told me that he had looked at the whole area of autism and music therapy. Music therapy he felt that in many cases it was extremely effective.

I was reminded of this conversation when I spotted this fascinating infographic.

The purpose of this blog post is to find out how well music therapy works for people on the autistic spectrum.

 

Now we have never used it for our son. On the whole he finds music a bit overwhelming especially when loud. So I’m very keen on hearing the views of other people.

It would be great if you could share your experiences in the comments section below. You might want to consider the following questions but everything you would like to share will be of interest to our readers:-

a) Have you or a loved one ever used music therapy because of ASD?
b) What did the music therapy involve?
c) How effective was the music therapy?
d) What is the role of music in your or their lives?
e) Finally would you recommend music therapy for others?

Thanks very much in advance!

 

10 Surprising Facts about Autism and Music

From Visually.

cagniforous Music Therapy was the first therapy we tried with our daughter outside of her school (They do ABA with her at school). She’s been doing it for over a year now, and loves it! She loves music in general also. It consists of the therapist bringing several instruments and playing them / having my daughter play them, trying to get her to copy behaviors, say words, interact with the therapist. She’s made a lot of progress with it and has recently begun to say words.  She is most motivated to say those words during her music therapy and often any new words come out during their sessions.  We tried speech therapy for a bit, but I felt that the music therapy was actually helping her speech more. I only wish that Insurance would cover it!
AchVach I Have used therapeutic listening with my son twice a day for 30 minutes each time. These was supervised by an occupational therapist. He wouldn’t listen to each piece for two weeks. Some music brotherly him and other pieces he enjoyed it. By the end of the two weeks he would listen to all pieces even those that brothered him. He did not need to complete the second cycle. The Therapy improved his motor and verbal skills and sensory issues. I believe it worked but it needs to be supervised. One cannot do it by themselves. It can bring the opposite result. As well, it needs to be done in combination with other occupational therapy.
MelodyJoy1 I have not used “music therapy” with my son, per say, but I have found that if he’s distracted or tuned out I can get his attention far more easily by singing whatever I have to say, especially if I need to give him directions. I am pretty much always singing to him , because he resonates with music much better than speech.
Tiffimbody24 My 4 year old non verbal daughter LOVES music therapy! She loves music period! At her school, they use music therapy to help with speech. She recently started trying to sing!!!! She loves playing instruments and dancing. Her and I now play, duck, duck, goose, wheel’s on the bus, and head, shoulders, knees, and toes! I’m very thankful for music therapy!
Shawnamj My 2.5 year old non verbal son loves music. He will do hand movements to songs like itsy bitsy and if your happy and you know it clap your hands. I could never get near him with a tooth brush but I noticed him watching the Sesame Street brush your teeth song. If I sing the song he has no problem brushing his teeth. I think music will play a big part in his learning.
JohnJaneczek Thank you for this post.  As a an undergraduate music major, music is on quite often in our house. We have two kids on the spectrum, ages 7 & 3, We took our youngest to Kindermusik classes (a nation-wide franchise) and he responded very well, it involved sing songs, dancing, teaching the kids based on a theme, (one week was farm animals and the noises they make, one week was spanish words, etc)  The first 30 minutes are just the kids and teacher, but for the last ten minutes, parents and siblings come in and join the class, they also have resources for music at home. He responds well and I would highly recommend it to others on the spectrum!
SimonParton Great graphic, totally agree with all the info on there. I studied Music in university & wrote my dissertation about the relationship between music and autism. Primarily I used music technology to engage those with ASC in music making activities to explore different ways of communication. The beauty with technology is it can be altered (volume wise / sensory wise) and can enable all to be creative regardless of ability. My brother is autistic, and a lot of the time, the fear of getting something “wrong” is also overwhelming. My brother is now 21 and has started playing guitar and has become very interested in music as a whole. He definitely has perfect pitch (which I am very jealous of!!).

I found that repetition and familiarity worked and related directly, really enabled a sense of calm with my brother, explored a range of different communication methods and just seemed to work when using technology.

I now work for a company that runs songwriting / music production workshops with a range of participants. I’ve worked with some ASC groups and have found it again incredibly useful (music and music technology). While what I do isn’t strictly labeled as practising music therapy, I think music making and exploring creativity/communication is definitely a form of therapy.

If you’d like any more info on what I’ve done and my experiences please don’t hesitate to get in touch on simon.parton@hotmail.co.uk