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I don’t feel believed

NAS39316

My 7 year old daughter has just had her referral accepted and we are about to start the process of getting a potential diagnosis.

While we are waiting things at home are getting pretty bad, almost daily meltdowns which are lasting longer and longer. She gets very stressed and anxious and struggles to verbalise it. The problem is the school don’t see any of this, she hides it all at school and then it comes out at home. I had a meeting with her teacher today to see if we could come up with a way for my daughter to express how she’s feeling at school because often something happens at school and she holds it in all day. The teacher outright said she doesn’t believe she’s autistic and she doesn’t see a problem (she expressed as much on the forms that she had to fill in for the referral). 

I feel like the school have me down as some crazed, neurotic mother who is making it up or just a rubbish parent. I left that meeting feeing crap and not knowing how to go forward and deal with this. I can’t understand how they can outright dismiss this as a potential problem. 

  • Hi NAS39316

    In addition to the great community advice, I'd like to post links for our Educations Rights Service and the Autism Helpline, just in case they are useful.

    The following article contains a lot of helpful information about education for a child with an autism, this includes information regarding getting extra support for your child in their education setting - http://www.autism.org.uk/about/in-education.aspx   

    You can search for schools that cater for children with an autism spectrum disorder on our Autism Services Directory - www.autism.org.uk/directory.aspx

    It can help to pass on information specifically for education professionals about autism spectrum disorders. The following link contains information written for education professionals - http://www.autism.org.uk/professionals/teachers.aspx

    You may want to contact our Education Rights Service who provides information, support and advice on educational provision and entitlements. Please see the following link for further information - http://www.autism.org.uk/services/helplines/education-rights.aspx

    You may like to contact our Autism Helpline team who can provide you with information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform:

    https://www.autism.org.uk/services/helplines/main/questions.aspx

    Hope this helps,

    Nicky-Mod

  • in reply to NAS39316

    I just feel like we are sooo alone in all of this. Reading what everyone else is going through has actually made me feel abit better as I'm constantly questioning myself. When we have a good day I think to myself it's not that bad but when it's bad it's sooo bad. I just want Noah to be happy that's all I want and any way I can make him happy I will. 

    They tell you there is all this help out there and there isn't unless it's extremely bad all if the time or really visual no one will help 

  • in reply to NAS39332

    It’s so hard isn’t it. My daughter has also had a really bad week, meltdowns every single day after school. I try so hard to be patient with her but she can’t explain why she’s upset and I feel like I can’t help. It’s exhausting 

  • in reply to NAS39332

    Getting rejected is a real blow, my daughter was rejected in the summer by the child development centre as cahms had used poor phrasing in referral letter "we don't see children to exclude diagnosis"  was the response I got also that she would not be seen as no social and communication problems identified, despite her school reply that these can be limited. As I said previously our school nursing team have been fantastic she was almost as angry at the rejection as me! We have now had to go the route of putting ehp in place getting help for daughters anxiety and gathering as many reports as possible to re refer her, this is long winded and doesn't really help us immediately but at least it is something. Keep talking to school keep behaviour logs, try the help line here they will have more specific information 

  • I am sat here crying reading this because this is what is happening at our home my son is 3 nearly 4 and things are sooo bad atm. I've had 14 straight bad days with him. I've just been declined a cahms referral as they want him seen by the neuro team but now they want a school report and I know that the school won't help. I voiced my concern before he started school and they have been no help. Noah thrives in routine it's when things aren't in routine and everyday living. I just want someone to listen and tell us how to help him. I don't care about a label. Just help for us to help him. It breaks my heart watching him sooo distressed over everything. The colour on something or texture or if someone has touched it or what order it's in it terrible 

  • in reply to Silverdale

    Sorry not sure why that has posted twice and the link doesn't seem to work. If you Google "NASEN Girls and Autism Flying Under the Radar" it should come up. 

    Also, there are so many strategies and supports that they can put in place without any extra money. So don't let them fob you off with that. 

  • It sounds like the school don't have any knowledge of how autism presents in girls. They may be comparing your daughter to their stereotypical image of what autism looks like and genuinely not recognising it as autism. I am a school Senco and have to admit that until a few years ago I was ill informed about female autism (it was researching it in relation to a pupil at school that made me seek my own diagnosis!). 

    Can I suggest that you offer them this document to read? 

    www.nasen.org.uk/.../resources.girls-and-autism-flying-under-the-radar.htm

    I agree that asking the school nursing team to liaise with a school might help. 

  • It sounds like the school don't have any knowledge of how autism presents in girls. They may be comparing your daughter to their stereotypical image of what autism looks like and genuinely not recognising it as autism. I am a school Senco and have to admit that until a few years ago I was ill informed about female autism (it was researching it in relation to a pupil at school that made me seek my own diagnosis!). 

    Can I suggest that you offer them this document to read? 

    www.nasen.org.uk/.../resources.girls-and-autism-flying-under-the-radar.htm

    I agree that asking the school nursing team to liaise with a school might help. 

  • in reply to NAS39316

    I'm so sorry you're going through this.  My son is now 14 but was diagnosed at 6. His primary school were excellent with additional support and were the ones that raised the flag of autism.

    We didn't get a *statement* as it was then called but they provided speech therapy and a couple of times a week he joined a small group of other children (All with varying needs) . They gave my son flash cards with faces so that he could say what emotion he was feeling. It's awful that the school are not giving you any support and I'd stick with it a dd trust your own instincts. No one knows your child better than you!  Girls are very good at masking. 

    Please call the NAS helpline for educational advice as I'm pretty sure the school have to provide  some support to a child that is struggling. 

    I wish you all the best.  Keep at it.  You're doing the right thing.  

  • in reply to NAS39316

    I can't believe that your senco said that! She should know that they can apply for a higher pupil premium for a child deemed as having special educational needs. There is alot of information on this site about rights and getting help in schools. If you continue to be stonewalled by the school I would suggest calling the helpline on this site or going straight to your local education authority 

  • in reply to NAS39248

    Thank you, I’ll try finding out about the school nursing team. The SENCO hasn’t been very helpful, she’s also said she doesn’t think there is a problem and that even if my daughter does get a diagnythe school won’t have the money to do anything. 

  • Hi 

    I really do understand what you are going through, have you tried contacting the school nursing team in your area as they work with the school but also with the services that assess children. You may find them more help my daughter is similar in that she functions well in school never lashes out but when she gets home it's like jekyll and Hyde! 

    The school nursing team are the ones pushing for my daughters referral as they genuinely understand that she masks things at school. Also try talking to the senco at your school they might be more help than the class teacher 

    Good luck