I’m eternally grateful to Amanda for suggesting we should go and get Katie assessed. I hate to think where we would be right now if it wasn’t for her. I can’t deny there are negatives to Katie’s diagnosis – I don’t think any parent would choose for their child to face difficulties in life if they could avoid it, and for me this does include autism, not because of autism itself but because of the general lack of understanding or acceptance of it. There is no avoiding the fact that Katie is living in a world that isn’t designed for her, that she spends an awful lot of her energy just getting through situations that most people don’t think twice about, and that while we can provide a more supportive and accommodating environment for her at home she doesn’t spend all her time at home. It’s already a battle to get her those accommodations or understanding in other places, especially school. But, on the whole her diagnosis has been a positive. It has definitely made me more compassionate and relaxed in my parenting (and I wish I had been more like that anyway and not needed a diagnosis to rethink things a bit), it has opened up conversations with Katie, and it has given us all a better understanding of why she feels and behaves the way she does sometimes. At the moment she views autism quite negatively but I really hope with more time and more talking she can accept it and acknowledge the difficulties it brings but also the positives.
Most of the changes we’ve brought about for Katie at home have been small but make a big difference to her. She has more downtime after school where she can do whatever she wants. We don’t make demands of her and we don’t ask her about her day. If she wants to be completely by herself she can and we leave her to it instead of encouraging her to join in with us. When she’s feeling insecure at bedtimes the priority isn’t to reason with her and get her in bed. The priority is to make her feel less alone and more secure, which these days means staying in her room with her until she’s asleep because that’s what she’s asked us to do. We are more lenient on screen time, especially given that a lot of autistic people find online friendships easier to manage than face to face ones. We give more warning on transitions where possible as it helps her feel more in control. Etc etc.
I think (hope) that these changes at home have given Katie more confidence. In hindsight I think she was masking at home as well as at school, which I feel really bad about. But since we have changed things up she seems ‘more autistic.’ I know that’s completely the wrong way to phrase it as if you’re autistic you’re autistic, but she seems more comfortable with telling us what she needs or what’s bothering her and also more open to trying things to calm down when she’s heading for a meltdown. Most things are trial and error for now but she / we have noticed that she likes pressure, so we’ve tried things like a weighted blanket, squeezing her wrists, really tight hugs etc. She also likes having her swimming hat on because of the pressure on her head. She’s told us things we never knew before, like that it’s painful for her to wear tights because it feels like pins sticking into her legs, and that she hates standing in line or in a queue because she doesn’t like being jostled around and she worries about people bumping into her.
The same is true at school. There are loads of small measures they can implement that actually don’t take any time or resource but make a massive difference just by taking away some stresses for Katie, such as:
- Sitting her on the end of a row instead of in the middle of the classroom so she doesn’t have noise coming at her from all directions and can easily leave if she’s overwhelmed
- Allowing access to sensory / fiddle toys. These are usually pretty discrete and can just be kept in a pocket or on the table
- Teachers being aware that she is oversensitive to tone and perceives any tone of irritation or impatience as being shouted at
- Giving access to a quiet space for Katie to use if the noise is too much for her or she needs some time alone
- Where possible giving notice if there is a change in routine eg a substitute teacher or if PE changes to a different day
- Letting her fidget in her seat or have her head in her hands / arms without telling her to sit up straight or look at the board. When she is doing these things she’s keeping herself regulated and avoiding too much sensory input. She is still listening to what is being said even if it doesn’t always look that way
- Access to ELSA support
- Letting her go out to break or lunch on her own instead of lining up with everyone
- Understanding that she doesn’t feel the cold and is usually too hot so if she wants to go outside without a coat in the cold weather that’s fine and she will be more comfortable that way
Unfortunately for Katie getting her school to acknowledge any of this or implement any support has so far proved unbelievably difficult. I can (sort of) understand that school kept reassuring us and telling us there was no need to worry about Katie. I am quite resentful that even having observed Katie the SENCO said there was no evidence to support a CAMHS referral. It’s one thing Katie’s teachers not noticing any issues but presumably a SENCO who takes time to specifically observe a child should be able to spot certain signs. Instead her refusal to support a CAMHS referral was the main factor that led us to pay a small fortune for a private assessment. I am very resentful of their attitude now that Katie has a diagnosis.
The assessment system is ridiculously over reliant on school input. We were told that we could self refer to CAMHS but that basically without input or support from school we would be at the bottom of the pecking order and probably wouldn’t get taken seriously. Our experience has been that parents aren’t really listened to and ‘professional’ opinions are much more important. Given that most autistic people, and especially autistic girls, are able to mask to varying degrees, this doesn’t make sense. Parents are the ones who see their children day in day out, who know them, who have the gut feelings about their children. I’m sure there are a few out there with dodgy motivation but most parents just want the best for their children and they need to be listened to more than they are.
I was way too optimistic in my belief that a diagnosis would mean that Katie could have some support and we would finally be believed that she needed it. I stupidly thought we could arrange a zoom call (no going into school in person, thanks COVID) with the SENCO and Katie’s teacher so they could understand some of her issues and make suggestions as to how they could help. Instead, having asked to speak to the SENCO I had to chase it up again before she bothered to phone me back, at which point the first thing she said was “Katie is keeping up academically and we certainly wouldn’t be supporting an EHCP”, (I hadn’t asked for one and didn’t even know what one was at that point), told me that Katie seemed fine at school so there really wasn’t much they needed to do, and got me off the phone as quickly as possible. That pretty much set the tone for how things have gone since. Any conversation I’ve had with the SENCO she’s been at great pains to point out to me that Katie doesn’t seem any different from the other kids, there is no evidence that she’s struggling at school, and she gets off the phone as soon as possible without actually doing anything helpful or productive. This is in spite of the fact that Katie’s diagnosis report mentions several times how extensively she masks, particularly at school, and that this doesn’t mean she doesn’t need support. The SENCO pushes back on everything I say and the inference is always that Katie is exaggerating or lying. Katie is constantly coming home from school saying she was told off for not listening (because she’s not looking up) or had her fiddle toys taken away from her and told they’re distracting her.
I don’t know if this is just due to the SENCO at Katie’s school being incompetent or if this is a common issue. Unfortunately from the support groups I’ve joined it seems like a relatively common theme. Autistic girls (big generalisation here) often don’t fall behind academically, they’re not getting into fights or trashing the classroom, and they’re not disruptive so they’re not seen as needing support. They sit there with their heads down, quietly surviving the school day, and then they get home and fall to pieces, but schools don’t see it so don’t take any accountability. This is definitely the case for us. Most of Katie’s meltdowns are related to overload from school and I’m convinced if they would just put some of the above measures in place it would make her school life so much more bearable. I am becoming a problem parent to school, not through choice but because I don’t see it as acceptable in any way that just because Katie doesn’t directly present as a ‘nuisance’ to her school they can’t be bothered to support her.
I have spoken a lot with the autism advice team at our local council who were really helpful and confirmed that the accommodations we’d asked for were 100% reasonable (but I’m left wondering why we had to ask for them in the first place and why school weren’t making suggestions themselves?). They told us to ask school for a support and achievement plan, which we did, and got sent some cruddy document that may as well have been written for another child because it didn’t resemble Katie’s situation at all and I had to ask them to re-do it. And then chase them up on it. The SAP is meant to be done in consultation with parents but Katie’s school never even told us they’d done one for her. I wouldn’t have known anything about it if the council hadn’t mentioned it. The council also wrote an anxiety management plan for Katie and sent it to her school, who didn’t acknowledge it and have basically ignored it. The autism advisors at the council can only advise (clue’s in the title!), they can’t actually make school implement any of their suggestions.
ELSA support was one thing school did say they could provide from October half term, but then it never really materialised. She had one random session before Christmas, and then in early March they told us Katie would be having ELSA every Monday at 2pm – one 1:1 session followed by a group session. She had three weeks of this and then they stopped. Throughout this I have chased, I have made a nuisance of myself, I got SENDIASS involved, and still they’ve essentially only managed 4 sessions on a Monday afternoon in 6 months. Katie doesn’t know week to week whether she’s staying in class on a Monday afternoon or whether she’s having ELSA sessions. On the days it hasn’t happened no one has told her it’s not happening, it’s just a case that no one turns up to collect her so she stays in the classroom. In her 1:1 sessions she has already had three different members of staff working with her so she hasn’t built a relationship with anyone or had any continuity. This is in spite of us reminding school on several occasions that she struggles when her routine is changed and could they give us notice where possible.
It’s a tough balance because I want to try and have a positive relationship with school. It’s not just Katie that goes there, Alice is there too and Matthew will be starting in September. But when they won’t budge at what point do I give up on that and go to the board of governors or make a formal complaint? One way or another things have got to change for Katie at school or she’s not going to survive it. Her self esteem is non existent and her anxiety is through the roof. She has been through a period of self harm. It’s not school’s fault that she struggles with anxiety, but they are absolutely accountable if they refuse to do anything to acknowledge her autism or to make adjustments for her.
We have talked about whether to move Katie to another school or whether to home school her. It makes me angry that we’ve even had to consider these. It shouldn’t be such a battle for her to be comfortable at school. But if she stays where she is and nothing changes she’s going to end up school refusing and she’s not going to make it to secondary school. She’s going to break soon. Ultimately we have now found another school that Katie has visited with us and said she would like to move to. We’ve made an application to the council for her to start there in September when she moves into year 5.
I know parents shouldn’t compare their children but it’s sad that the experience the girls are having of school are such worlds apart. Katie started off indifferent to school, which quickly changed to disliking it and now she hates it. Every morning is a mission to get her there and I feel awful forcing her every day to go somewhere she’s unhappy. She’s constantly saying she doesn’t want to be there and saying that she has a headache or a tummy ache. She’s not engaged with her lessons and hates doing homework (another thing we don’t force anymore). It’s an endurance test for her to get through every day. Alice loves school. She was bored silly in lockdown because she is sociable and missed her friends. She goes bounding in each day and comes home telling us all about what she played, who she played with, who said and did what, a lesson she particularly enjoyed. She looks forward to going back to school after each holiday. She is having the school experience that parents want for their children. I don’t expect Katie will ever get to that stage, but if she could get to the point where she doesn’t mind going to school that would be a big win. If Katie’s school could have accommodated neurodiversity more willingly that would have been a bigger win. She should not have had to endure such a miserable experience or be in the position that she’s moving schools just to function.
Mum life 