Ds in cognitive decline? and safeguarding concerns

[Maybeshesbornwithitmaybeitssertraline]

Ds5 is 12 and autistic. Today we got a phone call from the safeguarding teacher at school. She said that ds's cognition and speech is getting worse. We haven't noticed this at home, he has never had a problem with his speech and he's always been average with his cognitive abilities. He has emotional development delay though.

He has always had problems with sleeping but I have been to the drs with him about it twice and they just suggest things we are already doing.

I will talk to the GP again but it will probably be a while before he can be seen. Meanwhile I'm worrying he has a degenerative disease or a brain tumour. I'm also worried about why it was the safeguarding teacher who phoned us. Do they think we are doing something wrong or do they think it's concerning that they have noticed a decline and we haven't.

Op I’m sorry, this must be upsetting. Is your ds very stressed on under particular pressure? Some autistic people can suffer from autistic regression where it looks like they’re going back in some areas of development.

im not an expert but please try not to think it’s a tumour or degenerative disease. And as for schools, they often see different behaviours to parents, because the child is much more likely to be stressed at school. I would try to get a detailed explanation, from them, of what they’ve seen and id also try to work out if there is anything that is new that could be affecting him. I’d be gently probing him to see if there are any areas he is struggling in.

By areas he’s struggling in I meant everything from really understanding his senses, issues with communications, school work. Puberty is hard, everyone’s changing and other kids will be developing new social skills and unwritten communication that he might be struggling with. Some kids with autism still like toys but then feel they have to pretend to be more adult. I have two autistic children like this.

Look up autistic burnout (barriers to education website has good info) and PANS/PANDAS.

Don’t read too much into the “ safeguarding” title it’s just an area of responsibility and they may deal with pastoral, parental contact etc.

I’d ask for a meeting with the SENCO to discuss their concerns. Are there any professionals involved who could observe in class? An advisory teacher for example?

If concerns are significant and he has an EHCP request an early review. How long since the EP assessment?
Wise to explore the medical route too. Puberty and burnout/ increased expectations may be involved.

I'm pretty certain if you call/ask for an appointment with your GP, stating cognitive decline in a child, you will be seen ASAP, possibly under a 2 week pathway.

Firstly, the safeguarding lead ringing is probably because she or he has a little time in their timetable for following up individual kids. Other teachers won't likely have this, so someone like your child's form tutor might not have time to ring. I guess possibly a sendco could have rung, but they may well not have had time especially if they have a teaching role too.

I agree try and get a meeting with the senco to ask exactly what they have noticed that is concerning and then follow this up with his GP. Puberty combined with the pressures of secondary school could well be putting pressure on his brain and causing what seems like decline and is actually increase of things to do. You know those days when you come back from work and feel like so much info has been put into your brain, it's flowing back out your ears?! That could be increased work load not cognitive decline!

Thankyou. He hasn't got any professional support now. The neonatal paediatrician discharged him to the autism pathway when he was 3 and then he was diagnosed aged 6 and discharged aged 7. He last saw the EP when he was 10.

He doesn't like school, but not for any particular reason that I can find out. He says he doesn't like writing but the school tried him with a laptop instead but he didn't like that either.

Managed to get a meeting with the deputy senco for Friday.

That’s good. I’d make a list of questions as you might forget something. Ask about an EP assessment.
Love your username btw!

He is hitting teen years.. Could that be having an impact

Thank you. I've written a list of questions and will ask for an EP assessment too.

Parents evening today. His form tutor said he was less responsive and had to be reminded to do things more often in September than he was in July. But things have settled down again now. He is at "working towards" in some subjects which we knew from his year 7 school report.

So now I'm confused and don't know what to think. He normally takes a while to settle after a big change like going back to school, that's normal for him. I wouldn't call any of that cognitive decline though, which is what the safeguarding teacher said he had.

See what comes from the meeting and ask if it’s cognitive decline/ regression or difficulties with organisation or executive function skills.
Memory and receptive language difficulties will impact on attainment. Has he had a recent SALT assessment?

FWIW, your son's sleeping problems and changing to a new year could cause a temporary decline in concentration etc. Fingers crossed that it's just that, but hopefully he will get a referral soon.

It’ll be hormones, overwhelm or stress. It absolutely won’t be cognitive decline if you’ve noticed nothing at home. These are environment-specific symptoms. Safeguarding FFS! Is there no one in the building that understands autism?!

He hasn't seen SALT since he left pre school in 2018.

Every so often he says he hates school but if I ask him why, it's all things that happen in every school and also home education unless I do unschooling with him which I'm pretty sure wouldn't work with him anyway.

He is definitely struggling with hormones. Puberty when you don't really have the capacity to understand what's happening must be scary for him.

Is it possible “cognitive decline” was used when “autistic regression” would be more accurate?

The change to year 7 would be more than enough to create a temporary loss of some skills and could well be exacerbating sleep issues.

Is Melatonin prescribed? It’s not a magic bullet but it helps.

The change from primary creates so much extra load for all children.

I think school can be so hard for kids with autism. They can use so much energy dealing with the environment that the actual work is just an added stress.

It's good they are looking out for him and it's good you've got an appointment. Also the fact you haven't noticed decline at home does suggest it could be school related.

The 'human interaction' elements of autism (I'm not an expert just a parent so my language is probably wrong) can get harder with puberty as dynamics between kids change and relationships get more complex. My autistic kid found years 9 and 10 really hard looking back.

Due to burnout and especially in times of being roo overwhelmed I would say there are times my cognition isnt what it used to be. Reat has helped.

Thankyou. Meeting went OK. Senco said that it shouldn't have gone via the safeguarding lead, it should have been an email from his TA. He's apparently not in cognitive decline, he's just tired and struggling a bit with a long half term. He is happy at school which is good to know because at home he is always moaning about school.

DS used to have a rough patch each year at school about this time, at primary anyway. We think adjusting to going back after summer, tiredness builds up, ready for October break.

By the end of primary it wasn't a thing. He got an ADHD diagnosis along the way but it hasn't been a massive issue. Helped get him more time in exams and a bit of tolerance from school. He's off to uni next year.

Pissed off for you that they caused a panic.