Could Selective Mutism be part of ASD? Anyone else feel their child may have this and what did you do?

[IslandGirl]

Hi, I am wondering if there are any other parents out there with a similar problem who can offer advice from their experience? My 5 year old daughter, recently diagnosed ASD, does not speak in some situations but is highly verbal and practically never stops talking at home to us! She only speaks to us (her parents) and her two Grandma's. She's never spoken to her Grandad, Uncle and many other family members. When we are out she will not reply to people in shops, cafe's etc when they say hello and does not speak to family friends, some of whom she's known since birth. At school she does now speak one to one to her teacher and LSA and a few children but not many. If we meet her teacher outside of school she will not speak to her then. She does not answer the register or speak in front of the class at all.

 

To me I had felt this was selective mutism but her SALT disagrees and she has now discharged us due to our daughters good level of verbal and language skills. I feel a bit lost in the wilderness now as to where to go from here. I was kind of told there isn't really a problem but to us it is a problem, especially her not speaking to other family members.

 

Has anyone else experienced similar problems with their children of good verbal ability but just not speaking in some situations? Has anyone tried any strategies that worked? Or had any particular type of professional help that worked?

 

Thanks for your advice

[Beth_]

Hi

There is a chapter on mutism in the Aspergirls book by Rudy Simone http://www.amazon.co.uk/gp/product/1849058261?ie=UTF8&tag=dooaday-21&linkCode=as2&camp=1634&creative=19450&creativeASIN=1849058261 which I found really interesting.

 

I refused to talk to a lot of people as a child, especially friends of my parents. It was made worse by my parents continuously telling me off for not talking. It wasn't something I had a choice over though, I just couldn't. It's something I grew out of (mostly) and I think that a lot of people do grow out of it.

 

[Mandapanda]

Hi IslandGirl

 

My youngest was like this when younger. He wouldn't talk to people if he saw them 'out of context', for example seeing the childminder at school instead of at her home. He did grow out of it, but it appears (in hindsight) to have been a sign of what an anxious child he was, although he hid it very well most of the time. He has many anxieties and his senses are super-sensitive.

 

I think Beth is right, it could make it worse by keep telling them to talk. If it is anxiety related they can't just change their behaviour instantly.

[Sally44]

My son also has not spoken to, or recognised people he says and knows in school.

He cannot remember their names and struggles to remember what they look like. He does not have prosopagnosia, but there is definately a difficulty. If your child also has these difficulties and processing delays she may not recognise people.

If she is quite anxious that might be why she does not speak infront of the class and other family members.

I agree that there is no point pointing that out to her. Have you ever tried using visual communication? My son can also 'speak', but has a language disorder and the SALT agreed that when upset or distressed or anxious that his ability to speak and communicate diminishes. So we used a clip on keyring that contained a number of picture communication symbols such as "help", "I need the toilet", "hungry" "want to play" etc. He was taught to go to an adult and show them this symbol. That quickly lead to him using those words with those people in those contexts.

 

I think it is inappropriate for the SALT to have discharged her. Has she assessed all of her receptive and expressive communication skills as well as her social communication skills? Has she assessed her auditory memory, auditory sequencing, short term memory and auditory memory retrieval? Has she used standardised assessments that have given a score for each area of ability eg. comprehension, narratives, inference, sentence and grammar formulation, word finding, word similarities, rhyming, etc etc the list is quite extensive. If she has not, then I would suggest you speak with IPSEA.org or the NAS.org and get their advice. Then phone and speak with the Head of the SALT Department.

 

Firstly your child is diagnosed with ASD and not Aspergers. That means she will most likely have greater difficulties with language than someone with Aspergers and her difficulties have to be significant for her to receive a diagnosis in the first place! Is she okay with using pronouns, does she use echolalia at all, google Semantic Pragmatic Speech Disorder too. Difficulties with acquiring language are closely associated with learning difficulties such as Dyslexia. Is she doing okay with literacy?

 

I wrote to my son's SALT department and said that as he had an ASD I wanted a SALT experienced in working with children with ASD and speech disorder (which he also has). Don't assume that the SALT has this experience, they may not. If they have not carried out standardised assessments ask to do so and list all the areas you feel she has difficulties with (apart from the mutism). eg. if you ask her a question does she reply to it on topic, or does she reply with something totally unrelated? Can she take turns in conversation? Can she join in on another conversation and ask questions about the other child's topic? Then bring up the mutism and say that you would like your child to be given some kind of visual augmented communication for those times so that she can communicate her needs non-verbally.

 

If she has not been assessed for her social interaction and communication skills also ask them to assess this. If the SALT is saying that she has no language difficulties and no social communication difficulties is she suggested that she is not ASD??? If you ask the question like that they are going to find it very difficult to say "we believe she has no SALT needs".

 

If they still persist and say she needs no input, then you can always get an independent SALT report. But first try to get the SALT department to carry out standardised assessments because they will give you a base line of her scores in each ability set from which you can measure progress over the next year. If she makes improvement when re-assessed then that is great. If she makes no improvement you would be seeking for more SALT input etc.

Edited November 24, 2010 by Sally44

[IslandGirl]

Sally, thanks so much for your reply - that's really helpful - lots for me to think about and look up and good advice re taking things forward. I am uncomfortable with her being discharged so this is really good advice - thank you again.

[Karen A]

Is the SALT trained specificaly in ASD ?

 

Ben had dysfluency [a stammer] when he was three.He had SALT every week for 18 months.However the SALT never recognised that he had Social Communication Difficulties.He was always seen with me or just with the SALT so she did not pick up his difficulties with Social Communication.When Ben is leading the way and talking about things that interest him he has extremely advanced language.He was assessed a couple of years ago as having the vocabulary of a twenty one year old.

 

A CAMHS psychiatrist who observed Ben in the playground only needed to observe him briefly to recognise that he had difficulties with Social Communication.

 

Please do push for a SALT assessment from a SALT trained in ASD.Ask for some observations to be done in school during structured and unstructured times.

 

If your child is not talking in school this will impact her ability to learn.The foundation stage curriculum has a very strong focus on communication.I do know of a child with Selective Mutism who obtained support in school it is regarded as a Special Educational Need where it impacts a child's ability in things like answering questions,completion of group work or reading out loud.So it may also be worth talking to the SENCO and ensuring your child is placed on the SEN register if she has similar difficulties.

 

Karen.

Edited November 24, 2010 by Karen A

[av16]

Can I suggest that the school purchases this book http://www.amazon.co.uk/Selective-Resource-Speechmark-practical-sourcebook/dp/0863882803- if they won't and you can afford it I suggest you try and get it. The book provides lots of useful information for parents and teachers and some of the strategies I have seen used to great effect.

 

Maggie Johnson one of the authors is well known for working with children with selective mutism - there was a tv programme on it earlier on this year and her strategies were shown.

 

The school should also refer her to the ed psych and ideally the SLT should work with you and the ed psych to implement the strategies. I have seen this work for 2 children in 2 schools so there is hope! <'>

 

Selective mutism is a side effect usually of anxiety which is of course often seen with people who have autism. A referral to CAMHS could also help as they can help provide the child with strategies to manage anxiety. If you want more info pm me as this is an area that I know schools have to address as if they don't the chances are the child won't 'grow out of it' (as I have been told many times by people who should know better!).

 

Good luck