Autism with slow processing speed

[Seekingcomfort]

I posted this in the sen sections yesterday but so far no one has responded this thread.

My 14 yo has been diagnosed of the above recently and now I m worried about dc’s future. My dc was doing okay until the end of primary school. Dc past both yr 2 (2bs) and 6 sats. It was when dc started yr 7 things began to fall apart. Dc was placed in the top sets for Eng and maths but couldn’t cope and was moved down to set 3 and 4 in year 8. Then dc started to suffer from anxiety and subsequently mental health during lockdown. My dc was hospitalised for a few months and got the diagnose. Just want to hear from others’ ideas and experiences.

Hiya. You sounnd like you've been having a rough time, so have some

My ds1 (16) has the same diagnosis but he got it a lot earlier (and without lockdown/ hospitalisation) so our experience might not be that similar but I'll lay out some stuff and you can see if it's useful.

We've worked really closely with school on three things that are key in high school that matter far less in primary school.

Note taking: there's absolutely no expectation that he will be able to take functional notes (his processing is too slow) so his teachers give him lesson notes to supplement whatever he does manage to capture in class. It takes a lot of the pressure off and means he doesn't have gaps because he just can't write as fast as he needs to. Usually this is just the PowerPoints they're using anyway in lockdown but some of the others go well above and beyond.

Writing: he doesn't have to - he has IT for every eligible subject and extra time for all others so that he can go back and rewrite his answers. We bribed him to learn how to touch type. His writing is worse than illegible but pick your battles, eh?

Social stuff: he has a link person who he trusts at school (guidance team) who he can go and see at any time. This has really helped with his anxiety but if I'm honest, I think the benefit came from knowing he can get out of the classroom when it's all too overwhelming. It helps defuse things for the teachers as well - they can suggest it to him and it's not seen as a punishment. I know it means he misses bits of classes but it's really helped both with how disruptive he is to others and how distressed he gets. He's done less of this as he's got older but in yr 8/9 it was a blessing.

A couple of other things - not having to do any of those hectic group learning classes (music, drama, art etc) as he's got older has really helped - he likes what he likes and hates the noisy free form stuff. Getting older rocks. Also, the social stuff has got easier as kids around him get more mature about accepting of differences. And him understanding his diagnosis and quirks has really helped, although that has come more recently.

If I were to give one piece of advice it would be to work with the school to understand what they can do to make reasonable adjustments for your child's needs - I try really hard to think of it as a partnership and accept that I don't always get what I want, but that we're all on his side.

My DD was diagnosed with autism at 8. She is bright and performed well at primary school. Secondary school was completely different, she struggled with everything. Her school made the right noises, but in reality made lots of mistakes which exacerbated things and she developed mental health problems.
She's now in an independent specialist school and much happier.

I would advise you to apply for an EHCP and look at what provision there is on offer for students who can't cope in mainstream school. In our borough there is a school for students who have emotional difficulties and need a more nurturing environment. They do a reduced GCSE curriculum.

Just going through an autism diagnosis for dd who is now 13.
Thank you so much for that Cldashlda it is really helpful, especially the note taking, which I am just realising is an issue (she never gets more than half way through the pp slide)

She is veyr bright and at a super selective grammar, and it all started to fall to pieces in year 8, before lockdown, but lockdown has made it 100% worse, as she finds online lessons so hard and stresses all the time about social side of life.

@steppemum can you give some advice about how you are going about getting an autism diagnosis for your dd? My dd, 15, is on waiting list for CAMHS assessment. She has depression and anxiety but we now both think she is ASD, and this is the underlying cause of her mental health problems. We have only been told she will be seen ‘in due course’. I have heard the wait can be years. Any advice?

Thanks ladies, My dc now only does core subjects in a specialist school. Though dc s supposed to go back to the mainstream school in due course but dc really doesn’t want to. The mainstream school doesn’t seem to have a satisfactory plan in place to support dc either. In the past since yr 7 I had approached the school numerous times to suggest that dc should be assessed for personality or AS disorder but the school just kept ignoring me. They just tried to convince and reassure me that it was all about teenagers issues rather than ill mental health until dc had a mental break down that resulted in social services intervention and hospitalisation. I doubt the school wants my dc back tbh. Now I just want to make sure dc is getting all the appropriate supports and make plan for the post GCSEs.

@Seekingcomfort does your child have an EHCP? Are they happy in the specialist school? Is it meant to be just a short term placement? In my job i have come across students who thrived in specialist settings and then were deemed well enough to return to mainstream schools. They all failed to make that transition and some could not even get through the door.
If you dont feel a return to mainstream is in their best interests then you need to fight tooth and nail to resist it. Its often about money saving rather than whats in the best interests for the children as I well know with my own 13yr old with ASD

[quote QGMum]@steppemum can you give some advice about how you are going about getting an autism diagnosis for your dd? My dd, 15, is on waiting list for CAMHS assessment. She has depression and anxiety but we now both think she is ASD, and this is the underlying cause of her mental health problems. We have only been told she will be seen ‘in due course’. I have heard the wait can be years. Any advice?[/quote]
to be honest we are not very far down the road.
In dec she went to A&E - she had told school she had tried to commit suicide.
She was kept in and had a CAHMS assessment. CAHMS said she wasn't suicidal (she wasn't) and they would close her case as she didn't meet the threshold for support from them. But for the first time in front of dd I suggested ASD, and described why. The CAHMS person told me to pursue that through my GP as they thought it likely.
We are now waiting for GP appointment.
BUT I know the curretn waiting list is 2 years. I am going to ask GP to refer us to a private paed and try and do the assessment that way. She will never get through the CAHMS.
It is unlikely that she will get an ECHP, or paid for support in school, but a diagnosis woudl help her, and school in a variety of ways.

We have made little porgress since Dec, as dd needed time to adjust to this, and now she is fully on board we are taking next step.

We had a meeting with school after Dec incident, they are putting in place a load of support for her, (of course all on hold due to Covid) and are arranging for an Ed Psych assessment.

I have to say, as it is a grammar, they have very few students with SEN, and, apart from a few, those they do have tend to have high functioning (sorry, not current terminology, but short hand) ASD, and they tend to get diagnosed at secondary level, having coped through primary, so it feels as if they are quite on board with this. They are also keen to see her succeed (cynical old me thinks this is due to their stats, but hey ho).
Dd also receives Pupil Premium, and there are very few who do, and I think they are using her PP money for some of her support.

They have paired her up with a year 11 student mentor who got diagnosed herself just a year ago. Dd has LOVED this, and it has been really helpful.

There is loads of other stuff going on, dd is identifying as Trans, and telling me she has depression and anxiety, and it is veyr hard to know what is real and what is picked up from social media, and what is lockdown stress.

Thanks smartiecake, the mainstream school has applied for EHCP. But I don’t think the mainstream school is supportive. Dc already decided not to go back to the mainstream school next week. Tbh I think returning to the mainstream school will undo all the good work as now dc just got a bit more faith.

@steppemum Thank you. Sorry your dd is going through this and hope she, and you, get the support you need. I think we too will go for a private diagnosis. It will help dd to understand why she feels so different to everyone else.

@Seekingcomfort Hope your dd can stay in the specialist school. Sounds like this is the support she needs. Sorry you and your dd have gone through such difficult times.

I m worried that my dc may not even be able to do a level 2 course in a FE college! My dc only got level 2 and 1 for the GCSE pastpapers and dc used to get 6/7 for science test in year 8/9. I found it hard to accept that dc has a low IQ as she manage to past both sats for primary school. Also dc was put into top sets only after the school assessments in year 7. Unfortunately the school never listened to me when I approached the school numerous times to suggest that dc should have an assessment as dc may have ASD but the teacher insisted it was only a teenager issue.

@Seekingcomfort. It's so hard as mum's, try not to worry about the future. All you can do is try and get the best school/setting for her now. That will help to make progress for the future.
Have you looked into what options are available other than mainstream school? Has an education psychologist been involved? Have they made any recommendations for the provision your child needs?
I'm sure that they will be able to do a level 2 FE course in the future. There are many young people who start on level 1 or even entry level courses though and they all make progress and progress through qualification levels.

Thanks smartiecake, the specialist school dc attends is only temporary. It works with the mainstream school to help her gradually return to the normal classes. I believe dc is much better off just to stay with the specialist school till the end of year 11 because of her anxiety and the COVID uncertainty. I have no doubt her mental health will get worse again if she returns to any mainstream school. It may even result in further hospitalisation. No education psychologist has been involved yet but I will ask if my dc should have one.