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

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