Aspergers and selective mutism

Hi, everyone

Not sure how this all works yet as new to the site. 

I have 4 Children all boys from 21 - 12, two of which are likely to be getting a diagnosis very soon for Aspergers. I have already been through the diagnosis process once for my now 19 year old, but they felt he was borderline so could not do a diagnosis, now however as he as got older, they have decided they want to re assess as they feel he is on the spectrum. 

I also have a 14 year old, who is almost at the end of diagnosis. I have done alot of online research on Autismn and have also learned through my own experiences of coping with different situations, but i must say i am struggling slightly with my 14 year old who has selective mutism also and am wondering if anyone else has a child with selective mutism, that can share any pointers.

Thank you xx

  • Hi, Have just joined this site and saw your post. My daughter , 13, has ASD and selective mutism. The ASD wasn't picked up on until her transition to high school, and that's when the SM kicked in. It was too much to cope with for her.

     She's in a mainstream secondary school, for now anyway. 

     Not sure if I have any pointers, as such, as we are just beginning to get to grips with the SM now; she hasn't spoken to anyone in school for almost a year now, not even other children, not even me.

    How does your son's mutism manifest, at school? At home also? Are the school helpful and understanding? My daughter's school have been trying hard, but with little success so far. It just seems like meeting after meeting, where nothing is ever resolved.

    It can be extremely wearing, especially as there is little understanding among the general public of these conditions. 

     Sorry to prattle on, just haven't met anyone with a child with both conditions before. x

  • Hi Mrshedgehog

    At last someone else, is out there, sometimes you feel quite alone in this world. 

    My son's mutism is not all the time, he occasionally will speak to teachers, depends what kind of day he is having, but he never speaks to doctors, therapists, dentists etc. He also chooses at times to not speak to family members include myself and my husband. He is in mainstream school, but we are finding it very difficult, the school say they understnd and will support him, but more things crop up where you feel you are banging your head against a brick wall. My son has bad anxietys and can sometimes go to school crying, but once calm he will get himself to class. i had a phone call once, (Few months back) theat he had been excluded until i provide medical eveidence that he really has anxietys..... it certainly takes it toll on us as a family. I have three other boys, one other also on the spectrum whose 19, but he does speak, which makes things a whole lot easier. I have seen on other forums, that alot of children that present with selective mutism, do get better as they get older and learn to cope with there diagnosis. I am clinging to that light at the end of the tunnel. Does your daughter get any outside therapy that helps? 

    And p.s don't worry about prattling on, i know exactly what you mean, i do the same. xx

  • Hi, so lovely to hear back from you, 

      Your son's problems sound very similar to my daughter's. The problems that she encounters because of her autism would be much easier remedied if she could communicate what the problem was, but as she can't ,it all builds into an anxiety meltdown. 

     It has often been the simplest thing, such as her pen has broken, but the whole lesson is lost to tears because she can't tell anyone. The school, and to be honest also me for a while, couldn't understand why she couldn't just write it down. I know now that once she is in that place , she simply can't think 'straight', so writing isn't an option. And if I, her mother , have taken so long to grasp that then her teachers aren't likely to understand.

     Does your son have a designated TA or anything in school? I know this has helped my daughter immensely, though she is only there as and when she's needed (ie when she has a tearful breakdown), and is only there at the school's discretion. Though she has a diagnosis of ASD from the local health authority, she doesn't have a statement of special educational needs. My understanding is the school has to provide all available help anyway. 

     As for outside therapy, we have had involvement with various agencies and have meetings at the school fairly regularly. So far, an educational psychologist has been in and asssesd her and made reccomendations to the school. Speech and language are involved but little has been done yet, and we are waiting for an appointment with CAMHS.

     For us, it's all about managing her anxiety and keeping her in school, we would love her to do well, but she has refused to sit exams in some subjects( all the humanities basically).

     How do the school expect you to provide 'evidence' of anxiety, surely they can see if he's not coping. It is their responsibility to provide for him in school. Have you had involvement with CAMHS yet, or an educational psychologist? There will be a wait for an appointment though, if your LEA is anything like ours. 

     And yes, I'm hoping for the light at the end of the tunnel too. It's not all bad though;there's always minecraft. xx

  • @jdfan - I would suggest you don't publish your email address on here as it is a public forum.

    Kind regards,

    Coco Moderator

  • Hi again,

    To start offwith at shool we had not a lot of help, they new he was in middle of diagnosis process and speech and language had been in to school and occupational therapy and advised school on how to cope when he is upset, they also had doctors letters as for a long time we had problem with him not wanting to do drama and he would always be in a right state on those days missing all lessons, finally after I went to my doctors they contacted school advising them to let him drop drama, which he now has he also never does swimming at school and never has even in primary, yet he swims brilliantly, especially underwater. They then excluded him and I went to the governors as I was appalled. A so called behaviourist teacher kept shouting in my sons face telling him to get to class or he will be excluded. My son kept saying phone mum, phone mum. It caused us two weeks of pure hell with my sons Anxiety's doubled and not eating sleeping. I went to the governors and head teacher and put in official complaint. Since then he has better support although at times they still do not seem to listen. They forget I know my child and know how he best responds instead I think they feel I am a parent that doesn't know, but they are slowly beginning to listen when they can see my strategy is working much better than there's. He has 3 support workers, so on a day where he is anxious coming to schools!, one will meet us in carpark and sometimes after 45mins of trying to get him out of car he gets taken to LRC (library) where he calms himself down and then goes to class when he is ready rather than forced. We have meetings constantly and county are involved because of his absences. We are at hopefully what soon will be the end of diagnosis, just going to add at, but he is also be referred to CAMHS although they didn't help my 19 yr old much Frown we will see. I have to say I am so pleased I have found someone going through the same thing. Just knowing this makes me feel a little better and hopefully we can both continue to share our stories.

  • Hi, I found this conversation on a web search of asd and selective mutism,  I realise this was 3 years ago, which might be a bonus for me!

    I also have 4 children, from 10-19, 2 of each.  My 18 year old son was diagnosed with Aspergers about 18 months ago - we knew but it was never an issue until he started his GCSEs.

    However my 12 years old daughter is really struggling, mostly anything at all to do with school, and its so distressing to see.  She has recently been diagnosed with ASD and Selective mutism and reading this conversation on here gave me goosebumps how similar what yours and Mrs Hedgehogs children were/are going through are to what my daughter is going through.  And you as parents.

    So I wonder 3 years on whether you have any advice or recommendations that might help us, I hope you both found the help you needed for your children and your children are happier.

    I look forward hopefully to hearing from you xx