Archived Ask an Autism and Aspergers adviser [CLOSED]
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Receiving too many notifications? Adjust your notification settings.

Help & Advice needed

Hi,
I need some advice please. 
My eldest son is having difficulties at school. He struggles to control his emotions and things can can seem very trivial, can send him in to a major meltdown. 
He doesn't have a formal diagnosis yet but after speaking to quite a few people with experience of working with children with an ASD, we strongly believe he is on the spectrum. 
I have been working with his school for a number of years now to try and get him some support and up until recently, it seemed to be going well. However, these last few weeks have been very difficult to the point where the headmistress actually sent him home.
When I met with the headmistress following this, I went in to the meeting expecting to discuss what had happened and how the school and I can work together moving forward. I was wrong!
What I actually got was a full hour of being told that I wasn't dealing with my son correctly. The headmistress made it quite clear that she didn't feel there was any underlying issues with my son and that he was just a disobedient child who needed a bit of tough love.
I'm now concerned that she will stop the help that my son is getting. I know that if that happens, things will just get worse!
Has anyone else come across this in schools? How did you deal with it?
Thank you!

Replies

  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,348 Disability Gamechanger
    Hello @AandJsMum and welcome to the community.

    Not to this extent personally, however did know a mum who was called in and told something similar as well as if her child did get a formal diagnosis the school would ignore it. Then went on to complain about the child's behaviour which was text book behaviour for autism.

    Please visit https://www.nhs.uk/Service-Search/Childrens-Adolescent-Services/LocationSearch/691 and enter your postcode. This will tell you how to access your local services. You may be able to refer your son yourself, or you may need to speak to your doctor and get a referral through them. Just as a heads up they are likely to approach your son's school so please be sure who ever refers him make clear that the school is now hostile to this idea.

    It took us 7 years to get anyone to take our concerns about our daughter seriously and then another two for a diagnosis. However once the school realised there was an underlying cause for her behaviour, and the secondary school she went to were brilliant with her. 
     
    Another resource I would share with any parent with a special needs child is to check out IPSEA https://www.ipsea.org.uk/pages/category/get-support but check out the rest of their site as well. They do have a help line you can call and get support.

    Sadly the opinion expressed by the headmistress is one that we and many parents of autistic children have had to listen too to many times.

    Hopefully some of our great members will be able to offer other support and help.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • AandJsMumAandJsMum Member Posts: 5 Listener
    Thank you for your reply!
    I have tried a self referral but got knocked back. I also asked my GP but was told they don't do GP referrals. 

    I have been getting some help from the parent support advisor at the school. She can see the issues my son has. She's suggested CBT and possibly being seen by an occupational therapist. My worry now though is that, if the headmistress doesn't feel he needs it, will she be able to stop the parent advisor from putting it in place?
  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,348 Disability Gamechanger
    Hello @AndJsMum

    I am a bit concerned that the options of getting your son help in getting an assessment is dwindling quickly leaving you with little or no options so I am going  to tag in @Sam_Scope as I know there have been recent changes in the support available at Scope and she will hopefully be able to direct the right person to you, or visa versa.

    Please keep in mind that there are other potential diagnosis similar to Aspergers and Autism. Sorry other than what I have suggested I am not sure what else to advise. If the parent advisor is a school employee than potentially the headmistress could put a stop to it, I just don't know.

    Hope you get some more advice soon.

    How are you coping? I know this can be a very stressful time for parents and hope you have a good support network around you.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • AandJsMumAandJsMum Member Posts: 5 Listener
    I'm feeling very stressed about the whole situation and very worried. On top of this, my 3 year old also has difficulties with his speech and language. Luckily I do have a supporting family but it's still difficult!
    My son only has 2 years left at primary school and I know any issues with his behaviour will be dealt with completely differently when he moves up to secondary.
    I understand that whatever the issue is, may not be ASD but to be honest, I don't care what it is, if anything! I just want him to get some help. Unfortunately that seems more difficult to come by without a diagnosis.
  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,348 Disability Gamechanger
    Hi @AandJsMum thing is if there is something underlying causing your son's behaviour getting the right diagnosis can mean getting the right support, rather than the wrong support. Especially if you son is autistic. If you are interested in pursuing CBT for your son you may be able to get your doctor to refer your son, or possibly refer him yourself. To find out if you can refer him yourself go to https://beta.nhs.uk/find-a-psychological-therapies-service/search and follow the instructions. For our local services you can either email or call.

    It is good to hear that you have got a supportive family, but of course you are going to be stressed. Just a heads up, as I said the last two schools my daughter went to were fantastic with her, this did not stop me having to go to the school several times a year and often have the same fights to get her the support that had been agreed. However while short term stress can be coped with long term it will have an effect on your mental and physical health. So please don't forget to look after yourself and your own needs as it is likely to be an ongoing struggle even with a diagnosis and 'support' in place.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • AandJsMumAandJsMum Member Posts: 5 Listener
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Thanks for tagging me in @Geoark
    Welcone to the community @AandJsMum I have moved your post to the autism advisor category where I hope @SparkleSheffieldAutismAdvisors will be able to help :)
    Scope
    Senior online community officer
  • SparkleSheffieldAutismAdvisorsSparkleSheffieldAutismAdvisors Member Posts: 32 Pioneering
    Hi @AandJsMum Firstly we are so sorry this has happened to you.  But we are not at all surprised! What you need is a paper trial.  What we mean by that is every time you speak to the school or a professional about your son in a meeting or if they have called you at home.  Put everything in writing (Preferably an email so get there email address) to them of what was said to you in that moment. E.g  asking your GP but being told they don't do GP referrals. Make sure you get the doctors name and as soon as you get home from that appointment, put in writing what has been said to you.  You also need to do this for the school.  The reason being there is no proof that anything was said to you apart from your word and it is clear that you are not being listened too. Unfortunately professionals do listen to other professionals and sometime forget we are the parents.  So you now need to show them.  Professionals can not ignore a situation when it is put in writing and especially if you are quoting them and if you have a paper trail.  The other thing you need to do is to keep a diary of everything your son does that is not what a child of his age does e.g meltdowns, struggling with his emotions etc as you need to show them proof of his behaviour.   Once again this is because they only have your word for his behaviour and difficulties at home.  Once you have logged about 4 weeks worth of the difficulties and struggles he has had. Go back to the doctors and show him the diary. (the longer you log your diary the more proof you have)  As that is solid proof of what is happening. And you need to show them what you and your son are going through is real and you need people to hear you. Really hope this helps.  
  • AandJsMumAandJsMum Member Posts: 5 Listener
    @SparkleSheffieldAutismAdvisors Thank you so much! That is very good advice. My son has just had one of his meltdowns so I'll start that diary right now!
  • SparkleSheffieldAutismAdvisorsSparkleSheffieldAutismAdvisors Member Posts: 32 Pioneering
Sign in or join us to comment.