We often have enquiries from parents who might be struggling to get a school to understand the needs of their children or who are worried about their child’s anxiety.
While we are not a parent support service, we usually signpost people to the following excellent websites and resources.
Parents and schools working together is what SEND (Special Educational Needs and Disabilities) legislation is all about.
As the Education, Health and Care Plans (EHCP) are part of the education system, you will be asked for your views and input maybe more than you may have done before. It is worth reading up on the process, what your rights and responsibilities are.
We wouldn’t want anyone to have to go through a disagreement or tribunal process, but if you do, you need to know all about it. Some good websites that help parents understand the legal framework and processes are:
Special Needs Jungle Click here
IPSEA Click here
Douglas Silas Factsheets Click here
Autism Parenting Magazine Click here
Below is the talk I gave at the Manchester Autism Show in 2023.
Visual Mapping is something we use to discuss any issues or situations with autistic pupils who are able to access this. It helps them see a conversation and aids processing because it is there in front of them – and they don’t have to rely on memory or be confused by your language or assumptions. It is great for adults to tune in and understand their autistic students and hopefully leads to good problem solving and a skill for life.
There are a number of channels to access a diagnostic assessment, first there is the National Health Service in the UK. To access this you would need to first go to your GP and ask for a referral. Be aware that there are long waiting lists but below are some guides to what should happen in that process. Some GPs do try to stall or put you off, so we recommend collating as much evidence as possible before you go.
In the UK, schools can also refer children for an autism or ADHD pathway. This works slightly different in each area. You can find out more on the NHS website.
We recommend that you collect as much detailed evidence as possible, noting things from your child’s early years and up to now. If they mask and school is saying that they don’t see things at school, then it is important to ask school to note down any idiosyncrasies and odd things your child does, when they have been withdrawn or anxious and to add this to your evidence.
For a good article about masking, click here.
National Autistic Society about diagnosis, click here.
NICE Guidelines, click here (be aware that these are national guidelines and the waiting times are not realistic).
Finally, you can pay for an assessment. Contrary to media reports this does not guarantee you a diagnosis. Please check services in your own area, compare pricing and check that they follow the NICE guideline for a multi-disciplinary assessment. The National Autistic Society post above will tell you more.
There is always a concern that Local Authorities and Schools will not accept a private diagnosis. However, if the NICE guidelines have been met and the assessors are fully qualified clinicians then it is unlawful to reject their diagnosis. The SEN and Disability Code of Practice (2015) is quite clear on this point – there is no basis in law for a Local Authority to reject a professional diagnostic report simply because it was privately obtained.
In the UK, an Education Health and Care Plan is a legal document outlining the strengths, needs and support for an individual child with SEND (Special Educational Needs and Disabilities).
There are four areas of need and so even if a child has good academic abilities in school, they may have significant support needs that impact on their education and life.
The school has a duty to first assess, make a plan, do the support they have planned and then evaluate the child’s progress before any EHCP application is considered. This is called the Graduated Approach and you are entitled to have a copy of the plan and be part of the meeting that evaluates the support and child’s progress. Please try to work with the school as they go through this process and you can expect to have all 4 areas of need assessed. This does not have to be outside professional assessment until the school has tried its own assessment processes.
You will find our course ‘What does an Educational Psychologist Do?’ really helpful in understanding the whole process.
To find out more about EHCPs, we recommend the following websites:
And if you want to find out more about the legalities, click here.
Emotional Based School Avoidance or (EBSA) is more common in autistic children often because the environment, the demands and the sensory challenges of being at school become more than they can handle. Along with the unpredictability of the school environment and lots of people, it can seem that the child is going into a forest fire every day. They often don’t feel safe but also battle with the desire to want to please their parents and their teachers. It’s a perfect storm of anxiety that needs the child to be believed and supported. We understand the depth of anxiety that autistic children experience and the difficulty schools have in understanding their needs when they mask and ‘are fine in school’. We know they really are not. Sometimes it is ‘challenging’ behaviours that we notice. This is what happens when the child cannot hold it in, no-one is listening to them or they cannot communicate in words how they are not coping.
We urge school staff to believe parents when they tell you their child is anxious or having meltdowns at home, even when you don’t see it at school. The child is like a fizzy drinks bottle – it has been shook up all day and they have tried to keep the lid on whilst in front of everyone at school. The embarrassment and shame of losing it front of teachers and classmates is a huge fear for them. When they get home to their safe place and safe people, the lid can burst off when all that anxiety and tension cannot be held in any more.
We have put our recommendations into 3 stages. If a child is just starting to show that they are struggling, then there are many ways of changing things at school and supporting them. They DO NOT need to have a diagnosis of anything for reasonable adjustments to be made.
Stage 1
This is when your child is starting to find it harder to get into school, they may be complaining of feeling sick (a good indicator of anxiety so do believe them) and you may have noticed some withdrawn or challenging behaviours after school.
Try to talk to the school calmly and ask them if you can work together to find out what might be going wrong for your child. You could start by asking the teacher or TA to jot down anything they notice over the week that might indicate your child is struggling. Examples can be, falling out with friends, struggling with finishing work or making mistakes, being more emotional or seeming tired in the afternoons. Sleep, illness, family changes, bullying, misunderstandings and early puberty can also be part of the picture. You don’t need to dismiss autism or ADHD even if these other things are happening. At this stage try to support your child, validate their feelings and tell them you are collecting information to help them but it might take a week or two to do that.
There is something called the Graduated Approach that the school can implement. This is a simple tool to enable them to assess what they know about the child and where they do well, and where they are struggling in the 4 areas of need that are in the SEND Code of Practice 2014. It doesn’t have to involve any outside agencies at this point, and it does not need to be formal testing. But investigating all 4 areas of need give a better picture of your child’s needs than just academic ability. These assessments are best when parents input their knowledge of their child and the child themselves has a chance to explain what parts of school are going well or not-so-well for them. The four areas are:
The school can then make a plan of support, try it out for a set time and them call a meeting to review any progress, changes or further needs. When we work with schools we often support them with this process but most of it can be done in the school by the teacher and SENCO.
To find out more look on your local authority SEND website – but this guide from Milton Keynes explains it clearly. https://www.milton-keynes.gov.uk/sites/default/files/2022-02/Parent%20and%20carers%20guide%20to%20the%20Graduated%20Approach%2016.12.20%20NB%20update.pdf
Tips for parents for when a child starts to avoid going to school:
https://www.youtube.com/shorts/1nktVxPMWzY Dr Pooky Knightsmith has some great videos to help you understand and support yourself and your child.
https://www.pookyknightsmith.com/keynote-ebsa-school-anxiety-prevention/
Examples of tips that can help you be more prepared.
Be sure to prepare in advance. For example, show your child a photo of their teacher and the school building. Also, develop clear and predictable outcomes such as who will be collecting your child and letting them know what will be for lunch.
Talk about the fun things to them like play time or their favourite subject.
Minimise sensory overload, for example, the journey to school.
Allow them time to ask and process. Autistic children shouldn’t be hurried in the morning.
Change parts of what they wear to make it more sensory comfortable.
The use of lots of visuals such as visual timetables and lists can help with this.
Our blog about supporting anxiety in autistic children has some ideas https://reachoutasc.com/8-ways-to-help-autistic-pupils-manage-anxiety/
Stage 2
This is when your child is having more and more days off, feels sick or has meltdowns or shutdowns regularly and everyone is feeling under pressure to ‘get them into school’.
These are some of the websites we would recommend for more information. They are kind and helpful.
(Some of these may be helpful – some may not but make sure you don’t feel blamed for your child’s anxiety and that what you use matches your child’s communication style)
https://www.lancashire.gov.uk/media/930428/september-2022-ebsa-guidance-toolkit.pdf
Some parents start the EHCP process at this stage. See above links about this.
Some parents with an EHCP consider Education Other Than at School – this explains what that is.
https://notfineinschool.co.uk/education-alternatives
If you think your child may have PDA – https://www.pdasociety.org.uk/
Stage 3
This is when a child is in a state that they are not well, cannot access school as they feel so traumatised by it and need support and recovery time. Often you have done all the things in stages 1 and 2 but it still hasn’t enabled your child to get to school. For autistic children this is often called Autistic Burnout. Your child needs mental health recovery time before any attempt at reintroducing education can happen.
Here are some websites to connect with those that understand:
https://www.autisticrealms.com/post/supporting-children-through-autistic-burnout-parents-guide
https://www.barrierstoeducation.co.uk/trauma
Dr Naomi Fisher’s facebook page https://www.facebook.com/drnaomifisher
And remember, recovery is possible – https://www.differentjoy.com
