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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
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Share this brilliant Autism Awareness Poem written by a young Autistic

Autism Acceptance

Autism Acceptance

A couple of days ago one of the readers of our Facebook page AutismTalk share this brilliant poem written by her two ones one of whom is an autistic. In the poem he tells us what it is really like to be a person with ASD at school.

Holly very graciously have us permission to share it with you here. She says “A poem written by my two sons !Daniel wanted to express some feelings and help people understand him and release how he feels and had his older brother help with words and spelling.”

I CAN NOT READ EMOTIONS ON YOUR FACE,THAT ISN’T A REASON TO MAKE ME FEEL SO OUT OF PLACE.
MY NAME IS DANIEL AND I CAN NOT UNDERSTAND DIRECTIONS WELL,I HAVE HIGH FUNCTIONING AUTISM IF YOU COULD NOT TELL.

I DON’T LIKE LOUD NOISES LIKE WHEN TEACHER YELLS,IT MAKES ME IN FEAR SO I COVER MY EARS. MY DISABILITIES MAKE THINGS HARD FEELS LIKE EVERY DAY I AM IN HELL.

I ALWAYS TELL THE TRUTH REGARDLESS OF WHAT YOU THINK,HATE HOW MY TEACHER CALLED ME A FINK.

I HAVE BEEN BULLIED MY TEACHER AND PEERS,I SPEND MY DAY AT SCHOOL WITH FEARS I FEEL IMPAIRED,MY MOM TELLS ME TO BE ME AND NOT SCARED.

I MELTDOWN AND GET FRUSTRATED,I DON’T FEEL WELCOMED AT SCHOOL BECAUSE WHAT THE TEACHER,KIDS AND PRINCIPLES HAVE DEMONSTRATED.

BY DANIEL AND EDWARD DIAZ

If you have a poem about autism you would like to share on this blog when not paste it into the comments box below or if you would like is to showcase it as a blog please sent it to info@patienttalk.org.

Thanks very much in advance.

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Autism – Some tips on communicating with people who are on the autism spectrum

In a perfect world I would not have to post this but…………

And no I don’t think this is perfect but it is a good way of starting to inform people outside the autism community. In particular family and friends.

If you have any other tips please do share in our FB group AutismTalk.

Tips on Communicating with Autistic Individuals

From Visually.