Help - Daughter privately diagnosed with Autism

Hi 

A few weeks ago my daughter, aged 14 was diagnosed with Autism. 

Problem is I had to go private to achieve this diagnosis as I wasn't getting of the help I needed from our GP and her school are not trained to deal with Autistic children and I was convinced there was something wrong. 

They used all the correct procedures to get the diagnosis and I am waiting on a report from them with the confirmation and everything they discovered through their assessments of my daughter.

Her life at school is either none existent as she refuses to go in (which now we know what we know, it isn't surprising) or if she goes in she has constant meltdowns and struggles tremendously.

Can anyone offer any advice to help her please? I am desperate as I am sure she needs to move schools, maybe to a special one but not sure what path to go down.

  • A few things might help. This is an amazing article https://www.psychologytoday.com/us/blog/everyday-neurodiversity/202108/are-we-giving-autistic-children-ptsd-school?fbclid=IwAR0e6pwWeDC7C0c3EJAE1qdd9PyMyCqkgwIvTDEIxPKGBOV7Qn9hrgN5kI8

    This company might be able to help https://www.autismeducationtrust.org.uk  they might be able to advocate or have the right literature to present to the school for reasonable adjustments. 

    Ideally, can you allow your daughter to be in an environment where she enjoys and can focus on learning? This should be priority. It can take a good deal of time for a school to get the necessary individuals educated correctly on this matter. 

    The key points to recognise involve 1. Monotropism - an ability to connect into a flow-state / hyper-focus state. This can be harnessed and have an amazing impact. But equally, interruption can be like waking up a sleepwalker. As we mature we can become a little more civil regarding it, such as internalising or breathing through being interrupted. 2. Hyper-sensory awareness. A quick search will upend a great deal of senses - internal, external, psychological. We don't seem to be able to filter them like our non-autistic peers. 3. Being wildly misunderstood and misrepresented. 

    All of these are impacted at a school in a social environment where we are a mismatch for modern society. This chap has an incredible way of showing our potential autcollab.org/.../

  • Consider your situation in peacemeal and pick apart the problem 

    First, is your daughter considered to be a school refuser and if so who from the school/authority/academy trust has been dealing with this issue? Shocking if you have had no formal communication regarding her schooling. If you have then dig out any letters or emails from officials/school/anyone involved. Find the name of the highest ranking professional and send them a letter/email detailing her absence and requesting support on the basis that she should be in school. Perhaps request a meeting to review the situation and to allow you to present new findings about your daughter's profile which will need special consideration under the Equality Act of 2010. Some councils/schools refuse to accept private diagnosis so do not allow them to go down that route. As educators we are legally bound by the Education Acts and the Equality Acts so save up your sleeve the fact that you know of this legal position to use if you need to. If you do not know the Equality Acts then Google special considerations as your child fits this criteria.

    Once you have your meeting and are able to present the information - no need to wait for the report- then you need to ask the school how their SEND department can help if it is a secondary school, or the teacher responsible for SEND if it is a primary school.

    Before any meeting sit and talk to your daughter about whawho she doesn't like and what/who she does like. Observe the things she does in her free time. Most of us have a specific interest or a way of calming difficult moments. Think about what has happened before any time that she is overwhelmed because these are the moments that will give you the key to helping her. Then use that information with the schoo/support agency/councill. They should be able to suggest something that will help her at least get to school, meet one person/build on that. As she has had a bad experience of school it may be that she needs very small steps to get back in so do not allow the school/the authority to suggest she must come back every day for the whole day. Ask them to consider phasing your daughter back into school. Please think about the successes and the positives that you see in your daughter because these are the key to helping her achieve,which she will if the school works with you on this. I do not know your area so I cannot provide specific information. However look to see if you or the school can refer your daughter to CAMHS because she has emotional needs that are not being addressed. Some councils also have a service you can contact directly to discuss issues regarding schooling so phone your local SEND Disability and Support Service. If you do not know how to do this then Google your council and find the telephone number for their support service because there will be one - Education inclusion/Families Support.

    Ask for help from one of these services  to contact the school if your experience with the school has been negative and you do not think that you can contact them yourself in the first instance. They are independent of schools even though the service is part of educational provision, and it is their job to support you through difficult processes.

    I am sorry that I cannot be .ore specific,as what you do now depends on how the school has supported/not supported your daughter's access to education.If you go to the right service for your area they will support you in your need. Remember that your child does not have an EHC and you can ask your local authority to carry out an assessment for an ECHP (Education Health and Care plan). Without an EHC schools can put things in place for her but it will not support her long term need. If you want your daughter to attend a specials hool then the authority will not pay for this unless the assessment identifies that this is her need. That is why your authority needs to do the EHC assessment if you do not have one. Once you have made the request for EHC your authority has sixteen weeks to let you know if they are going to do an EHC on your daughter. If they say no you can appeal. You can look up the process of EHC on gov.uk.

    Remember that your daughter's needs are more likely to be addressed consistently if she has an EHC (in England)If you live outside of England there will be different rules 

    Please begin the referral process a.s.p because the education system moves very slowly. Also.  remember that even if a school says she doesn't need an EHC you can request one from the authority. You do not need the school's permission.

    Good luck.

  • What problem do you have about going private? It makes no difference.

    Regarding the school, they should have a SEN department. You should let them know what things might make school more bearable for your daughter. She may or may not need an EHCP.
    What does she struggle with? Noise?  Big classes? You’ll need to address everything to minimise stress at school. 
    My daughter was allowed to wear ear defenders, and had a card which allowed her to walk out of a lesson without question. She was allowed to wear trainers, which meant the walk into school was more bearable. She was allowed to sit and work in her own outside the class as and when she felt the need. Or to sit in the library to work, plus a few other things. All small things, but they helped tremendously.
    At home, she’ll need ways to calm herself and relax. Does she stim? Might she need some more sensory input? Or less?

    If she refuses school,  don’t make a fuss of it. See if she’ll attend later. Better late than never. That’s what I aimed for with my daughter,

    What makes you think she needs a special school? Is she non verbal?

    She is at a delicate age, with increasing hormones. It’s tough for any teen, but she is now in high school, and is expected to fit in, know what to do, what to say, how to act, all while trying to mask her true self, live up to her peers, and manage her stressors. 

    I trust someone else with better advice will pipe up shortly.