Feeling lost after DD’s diagnosis

[lnks]

My DD, who’s sixteen and in Year 11, has just been diagnosed with autism. She was referred a couple of years ago by her school after they identified some concerns about how she was coping day to day.

It’s taken such a long time to get to this point, and now that the assessment has finally happened, and we have the diagnosis, I’m not really sure what we’re meant to do next. I can’t help feeling like there’s something I should be doing for her, but I don’t know where to start or who to speak to. It’s a bit of a strange place to be.

I also feel really bad that I didn’t notice that she was potentially autistic. Now that I do know, so much of her behaviour growing up makes sense. I always just felt like she was this lovely, smart, slightly quirky girl.

Shameful bump

I can't help you as a mum of a 16 year old as my DD is 10 and still waiting for an assessment.

However I was diagnosed as an adult so can give some insight into later diagnoses. First of all you dont need to rush to do anything major at the moment, its fine to take time and process everything, take time for her to heal from any pass trauma caused by not knowing. Forgive yourself for not knowing. get support in place with schools, exams etc.
The biggest thing for me was to educated myself on Autism in girls, and be gentle with myself when life was hard.
You've already helped her for 16 years with Autism you just didn't know it, now you're able to help with the knowledge, and hopefully right supports put into place.
It may also be possible to apply for DLA/PIP if she needs extra supports in life.

Most support is based on needs, not diagnosis, so a diagnosis alone isn’t going to change much practically. Although important for understanding yourself and others understanding you.

Is there something specific DD is struggling with?
Is DD receiving the support she needs at school? If DD needs them are exam access arrangements in place? Have you spoken to the SENCO?
If under 16, are you receiving DLA? Or if 16+, is DD or her appointee receiving PIP?

Thank you both so much. I really appreciate your replies.

DD does struggle a lot, especially in school. She has quite low attendance because she finds it very difficult to manage with the level of noise and just the general chaos of a high school. Her school aren't great at manging children like my DD tbh, despite the fact that it was actually school who initially contacted me to suggest they refer her for an assessment.

I would actually move her if I could, but I don't think DD would cope with such a big change. She will be taking her GCSEs in the spring and so I don't want to destabilise her.

I think the most helpful thing for me right now would be to know what school are required to do so that I can ensure they fulfil any obligations they have

"You've already helped her for 16 years with Autism you just didn't know it" < This was such a lovely thing to say

If DD can’t attend school full time, is alternative provision in place?

Does DD have an EHCP?

What support has the school tried?

Does DD use noise cancelling headphones/earphones?

At the moment there is no alternative provision in place. They have treated her as if she is misbehaving. There is a classroom in the school where children can go if they are struggling but they don't do much work in there. However, it was the staff member who supervises that group of children who approached me to let me know she thought DD was showing signs of autism, and she is the one who made the referral. Unfortunately, she left the school at the end of the last academic year. I did get DD some Earloops which help with the noise.

I have only just started looking into an EHCP because her diagnosis is so new and I still don't fully understand what they are. I honestly don't feel like I have any support whatsoever from school. All they seem to care about is their attendance figures.

Request an EHCNA. On their website, IPSEA has a model letter you can use.

Also request alternative provision under section 19 of the Education Act 1996. The LA is ultimately responsible for this. IPSEA also has a model letter you can use for this.

Request a meeting with the SENCO. Check what they are coding the absences as. They should be coded as I, thus authorised.

In our experience and that of our friends. The diagnosis didn't really help. It's not magic, there is no cure, but it may help with understanding and open up some pathways to investigate about how they understand the world. There felt like a push to get a diagnosis but it was anti climatic, it's just part of the Journey.

First of all, she is still that lovely, smart, slightly quirky girl. A diagnosis doesn't change her personality, and you have no need to feel guilty about not noticing anything. Only recently has there been increased awareness of how girls present their autism, they've always flown under the radar. The important thing now is that you have the benefit of a diagnosis to help identify and address what causes her the biggest difficulty.

It's quite late in her education already, but if she wants to go onto further education then it is still worth pursuing an EHCP needs assessment. This will mean that she will be assessed by an Educational Psychologist which will provide insight into the things she may be finding difficult. It is not a quick process though, so unlikely that formalised support will be forthcoming for her quickly enough to support GCSEs.

In the meantime, I'd suggest you do as much self research as possible yourself to understand her needs and make suggestions to the school as to the kind of reasonable adjustments you think they can quickly, easily, and without cost, implement now. Speak to the senco about this ASAP, armed with her new diagnosis report.

Finally, I'd recommend a book called Under the Radar: An Essential Guide to Autism and Girls. There is a lot of information in there about the kind of things an autistic girl in secondary school can struggle with.