Advice on autistic child

trayxc

I hope you're well. I’m reaching out to you for some advice, as I’m feeling unsure where else to turn.

My daughter is 10 years old and undiagnosed autistic, though we are confident she is and shes been on MATT pathway a few years. She experiences extreme anxiety around school, and even stepping onto the playground is a traumatic experience for her. She also has several learning difficulties, and although she has an EHCP in place, it hasn’t been very effective. Despite having a lot of support in school, She struggles significantly, especially when she transitions from a small, quiet thrive group in the morning, where she receives individualized support, to the much larger classroom in the afternoons.

The noise, busyness, and the adapted work being too difficult for her all contribute to her overwhelming stress. After an hour with her 1-1, she is left on her own in the classroom and finds it very hard to concentrate. She says her mind goes blank and the anxiety she feels just thinking about going back into the classroom is consuming her. Mornings are a constant struggle, with her becoming physically ill from anxiety, shaking, and crying hysterically, and I am heartbroken seeing her so distressed. Once at school, she spends much of the day upset, and although she tries to hold back the tears, she can’t stop them. She then feels embarrassed by the attention she draws from other students.

By the end of the school day, she is completely burnt out and spends the evening resting in bed to recover from the emotional and physical toll of the day. However, she remains anxious and unable to sleep, often suffering from night terrors. Every day feels like a repeat of this cycle.

I have spoken to the school SENCO about these issues, but they insist I must continue sending her in, even though she’s in such distress. I’ve asked if they can reduce her hours to help alleviate the stress, but they say this isn’t the right approach and are focused on addressing the reasons for her anxiety. They have referred her to CAMHS and Mind for counseling, but I’m worried this might cause her more stress, as she is shy and anxious about new people and situations. We also have an appointment with an educational psychologist next month to explore further ways to support her.

At this point, I’m deeply concerned about the toll this is taking on her mental health. She is constantly tired, anxious, and seems withdrawn. The contrast between school and the school holidays is striking—during the holidays, she is much happier, more relaxed, and enjoys spending time with friends. But as the school term approaches, the anxiety begins to escalate, affecting her eating and sleeping habits. It’s becoming more and more difficult for both her and us as parents to cope with the situation.

I’m struggling with knowing what the right course of action is. Should we continue to push through and send her to school, even though the process is so distressing for her? Or do we keep her off and face potential fines? We want to do what’s best for her, but nothing seems to be improving.

I would be grateful for any advice, insights, or suggestions on how we can better support Skyla through this difficult time.

Thank you for taking the time to read this. Any advice is highly appreciated

Mary_Scope

Hi @trayxc

It definitely sounds like you and your daughter are in an incredibly hard situation. It's clear Skyla is experiencing significant distress at school and it is very understandable why you are so upset about this. She is your little girl and you just want her to be happy so it's horrible to see her in so much overwhelm.

If the EHCP isn't working and you feel that things may be at crisis point, then it may be helpful to call an emergency review of the EHCP if you feel like you can't wait until the official annual review. This is where you and other Professionals will sit down and discuss the current EHCP and look at what has gone well and what needs to be changed etc.

I'm wondering if the school could provide a transition activity for Skyla during the transition of moving from the small group to the large classroom? Or possibly being able to join the classroom 5 minutes earlier(so she's going into a quiet calm environment or 5 minutes later(when the children have sat down and are settled) so she is not immediately going into a very large classroom full of excited children taking their seat and chatting.

Does Skyla have access to sensory equipment during these transitions such as ear defenders/earbuds or fidgets or calming weighted items? Having these sensory tools can sometimes help difficult transition for some autistic children.

Do the schools use visuals with Skyla? I'm wondering if a visual timetable may be helpful so she knows that she will be expected to move to a different class at some point in the day.

Similarly, what about visual timers or advanced warnings of change? These transition tools can be helpful especially for autistic children who have a lot of anxiety as they are being given prior knowledge and time to prepare rather than just being told straight away to do something and then being expected to do the said thing! Combine the demands and immediate expectations alongside lots of sensory input, it is a recipe for distress!

I understand the school's point of view about part time timetables as they're only meant to be used in exceptional circumstances to enable children to access as much education as possible. However, from what you have described it definitely sounds like Skyla would benefit from being on one at the moment as it sounds like she is really, really struggling.

You could suggest that a part timetable would benefit Skyla's needs because she is incredibly anxious going to and at school and are worrying that without at least trying a reduced timetable, Skyla would just get too overwhelmed, burnout and refuse school. Therefore, a part time timetable would help keep Skyla attending school. A part timetable may even be suggested by the Educational Psychologist as it is quite a common strategy to help autistic children who have lots of school based anxiety.

If you feel like you are not making any progress with the school or you just want more education specific advice/information then it is definitely worth contacting your local SENDIASS. These are impartial education specialists who are good to go to for education  information, support, questions etc or if you have any trouble or difficulties with Skyla's school, can help set up meetings and attend them, EHCP support

There is also IPSEA who are the legal experts when it comes to education in England. They also have lots of resources on their website as well as a free helpline for information and advice.

It is a positive thing that Skyla has been referred to CAMHS and Mind, hopefully she will be able to access some support but I understand your concerns over this. Does Skyla know she has been referred? If so, it may be helpful to prepare for your child’s first CAMHS appointment in advance if Skyla needs prior knowledge of an event. The Parents' Guide to CAMHS also has some good information on what to expect from the first appointment and preparing Skyla.

Not Fine in School is a good website for parents who have children that find it very difficult to go to school and if you scroll down on this link there is also information on how to report school absences correctly for mental health as it should be reported as an illness. This will hopefully mean you won't have to face fines on the days that Skyla may just not be able to go to school.

You are your daughter's advocate and it sounds like you have been doing a great job so far! You know Skyla best so don't be afraid to push for what she needs. She may need time off school to recover, especially if you think she has reached autistic burnout or is in danger of reaching it.

Unfortunately, it can feel like parents of disabled children have to shout a bit louder than everybody else to be heard and gain support so don't be afraid to do so and make your voice heard!

It definitely sounds like you are doing absolutely everything you can possibly to do help your daughter.

I hope this was helpful and I hope the educational psychologist appointment next month goes well and it gets Skyla further support.

Please reach out if you would like further support or have more questions.

trayxc

Thankyou so much for your advise... its mean alot.

Skyla does have a lot of help including visual timetable etc and she has lots of fidgets. She picks her skin and bites her skin when she's anxious so has picking fidgets and chew buddies. She has sensory problems and doesn't like the feel of ear defenders or earbuds/loops.. ive got them all for her and she can't cope with them on her ears. She does get a lot of support but she's still finding it very hard to cope. She won't even talk about school because it upsets her that much.

durhamjaide2001

Have you thought about homeschooling your daughter? It didn't work out for me because I just went into complete shutdown for a year but times have changed and I don't think you have to follow a curriculum if you are homeschooling.

I also recommend SENDIAS as they helped me when me and my parents had to go through tribunal. Also make sure you have an advocate I used Investing In Children for it at the time because they had something called the Natural Ally Scheme which has a friend/buddy and a worker and an advocate from SENDIAS I would just say be prepared to fight your corne

Amaya_Ringo

It sounds to me as though the school are a little intimidated by the complexity of your daughter's experience at school and don't know how to handle it, so are trying to push it under the rug a little by insisting against the part time timetable. That will also mean them making logistical changes and arrangements for her which they may think inconvenient to themselves.

You sound like an amazing advocate for your daughter - as an autistic person who went through all of my school education undiagnosed, I'm so glad she has someone like you to argue her corner.

You've had some great advice already from other people - I will just add that autistic people build patterns very easily. Because we don't have the same automatic expectations non-autistic people tend to have re situations, we have to build our own understanding of every circumstance. A series of good experiences can create a positive pattern - the opposite is also true. It sounds like your daughter has build a very negative pattern at school because of all the uncertainties and changes and disruptions she is struggling with and the lack of understanding. So yes, something needs to be done, and it is worth fighting the school for part time adjustments or other adjustments to help mitigate this. You can unlearn a bad pattern, but it can take time. Reassurances aren't always effective. It often has to be overlaid with a new pattern that is more positive, and that will require more engagement from the school to make her feel safe and less unsettled.

With the suggestion about going to class before or after the other students - I would say before, as after will lead to people staring. More than anything I hated being singled out and the centre of anyone's attention. You mentioned your daughter being embarrassed for people's attention during meltdowns, so I think that might matter for your kid as well. I remember being about seven or eight and making a vow to myself never to cry in front of other people after seeing another kid fussed over for having a tantrum - I am still trying to undo the damage from that now, and not conceal my emotions when I'm upset which is still my normal setting. Moreover, making her wait while everyone else goes in would just heighten her anxiety and make the crossing the threshold a bigger deal.

I think it sounds like she needs a safe time out space she can go to - with or without her work - during the day when she's in the busier classroom, so she can decompress. If she is allowed to come and go as she needs, then it will become normalised and she will feel like she has an escape, so will maybe become less anxious. I always feel less worried about big gatherings if I know I can leave at any time. Mostly, if I know I can leave, I don't have to. But if I don't know I can leave, it's a lot more stressful to manage. Being trapped in a space with lots of people is basically an autistic nightmare no matter how old you are!

Your daughter trusts you, she shares how she is feeling with you - that is a great thing and shows how good and loving a parent you are to her. It may well take time to rebuild her trust in school - and I do think a gradual or adjusted timetable would be a good start, so she can bit by bit build a more positive pattern and become less scared to cross the playground.

Wishing you both the best of luck.

trayxc

Amaya-ringo thankyou so much for your insight and advice, it means alot to have advice from someone that thinks the same has my daughter.. so thank you again.

My daughter is the same, she hates to be anywhere that is busy.. she struggles in shopping centres because she feels trapped in an unable to get out quick... she becomes very very overwhelmed. She also has separation anxiety when she's away from me because she know I understand her and she believes no one else does.

School have helped a lot with her if I am honest but the help is on their terms, if I ask for the help they tend to dismiss it, which annoys me because I know her best. I get the feeling they think I'm too soft with her and she needs a more firm approach and make her do things. In the mornings they used to be very nurturing with her and stayed calm but that didn't work because school is just too much for her... they now are using a more forceful approach and practically drag her off me in thr morning... and they force her and give her a little nudge to get into big class as soon as possible. She told me that she feels so scared to enter that class room and she feels sick and wants to escape but she's such a good girl, she wouldnt escape because she would be too scared in case she got into trouble bless her. She also has dyslexia and several other learning difficulties, she's in year 5 but works on a year 1/2 curriculum so shes scared of the work in there and says when she's left to do work alone her mind goes blank and she can't think of anything other than coming home to me. She's currently sat in the bathroom thinking she's going to be sick because she's worried about going in school tomorrow 😪

trayxc

Thankyou everyone for your a replies and advise... you really don't know how much I appreciate it ❤️

durhamjaide2001

https://forum.scope.org.uk/discussion/comment/966610#Comment_966610

I'm so pleased you appreciate it

anisty

Hiya, i live in Scotland so cannot comment on the education system in England.

However, i would say that your daughter sounds incredibly stressed and that would suggest the support is not meeting her needs.

Homeschooling is worth thinking about, or a much reduced timetable (and if school do reduce the timetable, have your dd go in during the afternoon so she absolutely feels safe that it's not going to extend. Go in at 2.30 and then work back if she's coping.

I have 5 adult 'kids' ranging from 32 down to 17 all autistic but only 2 officially diagnosed. My youngest managed well in primary but it all fell apart at high school. She had a burnout at 16 and took an overdose. Fortunately, she is ok and in a much happier place now she has left school.

My son who is far more severely affected (and the reason i joined scope) actually managed better in school as the support was in place from pre school for him. Now he is in a few hours supported employment each week. More than we could have hoped for when he was at school.

Oh - one other thing to say - my daughter is very bright and was in the top streams at high school - the university streams. She'd never have coped at uni, despite getting excellent exam results at aged 16. Now she is out of their system, she's on a practical course at a further ed college and it's taken the stress right down.

So - realistic expectations. Reduce demands. Keep routines clear and simple. She can thrive! All the very best.

trayxc

Thankyou Anisty,

I'm so glad your kids are all ok and happy now. That's all I wish for my daughter, although the thought of that is a long way

I have been seriously been thinking about home education because I feel it's the only way I can reduce her stress. She picks at her skin and causes it to bleed and bites her skin and her clothes when she's anxious and I am very very worried she might really try to hurt herself when she's older so that is a big concern of mine also. Especially when she reaches high school because there is not a chance she will be able to cope there, especially in mainstream. It's all so very very stressful and getting help isn't easy. I've fought so hard for her EHCP and it's basically useless because it hasn't helped her one bit.

Do I appreciate all the advice from you guys ❤️