Guest Post: Autism and Fetal Valproate Syndrome (FACS)

Welcome to the final day of 9 of guest posts here on my blog. I didn’t want to leave my blog a barren wasteland whilst I take some time out so a group of lovely bloggers offered to write a post and share some thoughts, recipes, ideas and crafts with you.

Today I welcome Emma, who needs your help. She writes about how Autism, and in particular, Fetal Valproate Syndrome or FACS affects her family.

Emma FACS

I’m delighted to be doing a guest blog for the lovely Victoria @VicWelton on Twitter .  I’m touching on a topic that at the minute is consuming my whole family and for anyone else that lives with this day to day will understand and hopefully be able to offer advice……… Autism.

All 5 of my children are diagnosed with FACS Syndrome (Fetal Valproate Syndrome) so for any of you reading this and have not seen my National Campaign : http://emma4facs.wordpress.com/epilepsy-pregnancy-and-pills-campaign

Basically all my children have been left with disabilities because of my medication which I take for Epilepsy.  At no point during my 5 pregnancies did any healthcare professional warn me or my husband the effects of taking Epilim (Sodium Valproate) on the baby

Statistically 40% of babies exposed to Epilim during pregnancy will be diagnosed with Autism.  All my children are Autistic from very mild to high functioning, and at the minute as the children are getting older it is this that in a way is dominating our daily life.

Luke is 8, and as well as being Autistic he has a diagnosis of Cerebral Palsy, Hypermobility / laxed ligaments and Severe Valgus Foot.  He has no sense of danger, is very noise intolerant, doesn’t play with toys and likes to be on his own.  We have a daily rigorous routine as having 5 children it helps both ourselves and the kids.  For any parent of an Autistic child Routine is imperative. 

Erin is 6 and also has a diagnosis of FACS along with Athsma, hypermobility and deafness.  Erin everyday wears hearing aids in both ears and even though hearing she was deaf initially was a shock and I was scared about the hearing aids, they have proved a great tool for her.

Erin naturally talks a lot louder as it is what she has been used to, but the older Luke is getting he CANNOT tolerate her noise/voice at all.  The slightest murmer she makes and he is in a typical Autistic meltdown, screaming/shouting and at times violent.  Hand gestures or body movements annoy him.  Luke could be upstairs in his or my bedroom and Erin playing outside in the back garden and Luke will be in complete meltdown.  IF Erin sings which she loves to do this irritates him immensely.  It’s at the point where we are now telling Erin to stop singing.  We know this is wrong as Erin should be able to sing as and when she likes but when we are witnessing Luke screaming shouting and punching himself……there’s just no words.

I have sat Luke down and talked about this with him and he has replied with “I cant help it mum, its like Im allergic to the nosie” “I cant help it” “I wish I was deaf”  I have explained in every possible way and offered ways for him to cope with this.  We have tried every strategy that has been suggested to us and implement things as much as we can:

Use headphones/eardefenders – to which don’t help

Count to 10/ leave the room/ stress ball

Quiet room/area – which does work and help him, gives him quiet time

Separate them both

You name it we have done it, but are still having this daily.

We are definitely not the only parents with this, as Autism is very complex and I know there will be thousands of parents with similar situations.  But when you have tried everything suggested and bearing in mind are still waiting months on inbetween appointments at CAHMS……what is next?

On behalf of the thousands of women I represent whose children are diagnosed with FACS,  any advice will be fully appreciated.

Twitter : Emma4facs

Facebook : FACSA

www.facsa.org.uk

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3 Comments

  1. August 17, 2014 / 5:11 pm

    Oh Emma – i really feel for you. I had never heard of FACS before. My son with ASD can be highly sensitive to noise at times and when we were homeschooling, he would cover his ears at the pencil noises (ie just the quiet sounds a pencil makes when writing) of my other son quietly doing his work. It was so hard to know what to do because neither was doing anything ‘wrong’.

    I hope you find some solutions that work for you. xxx

  2. August 16, 2014 / 5:26 pm

    Wow, this is such an eye-opening post to me. I have autism )and other disabilities) and my mother took a valproate during pregnancy. I have many other possible causes for my autism (premature birth, genetics, etc.), and my younger sister is non-autistic, but it’s still great to learn about this.
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