Uneasy with school's diagnosis - AIBU?

[Anonanonon]

DS2 (8yrs old) has recently started having meltdowns at school. SEN teacher has got involved and said she believes he has ASD. They have asked for himm to be assessed but are treating him as if he has ASD regardless.

Whilst I'm grateful for school's support I'm now growing uneasy. My sister works in mental health and has researched ASD. Sister-in-law also works as a SEN teacher and has a daughter who has been clinically diagnosed with ASD. Whilst both agree DS2 has a few OCD tendencies, both believe if he *does" have ASD then he is on the very high end of the spectrum.

Complicating the matter is the fact his mother and I are separated. DS2 has similar meltdowns with his mum so she agrees with SEN teacher's diagnosis. The cause is he has ASD. However DS2 never has these meltdowns when he is with me - and I co-parent 50:50, so its not like I only see him at weekends or for jollies. I also tend to set more boundaries with DS2 than his mum (screen time, etc), so it isn't that I'm giving in to all his wishes and giving him no reason to have a meltdown.

Added to which, these meltdowns started to occur when his mum began introducing her new partner to him. Said partner was previously the OM and their affair caused our separation. DS2 was present when they had their clandestine meetings, including the final one when I discovered them together and obviously got upset. He undoubtedly overheard our rows.

AIBU to suspect this may be a more likely cause of his meltdowns than ASD alone? DS2 was 6 when we separated so I presume he would have memories of the event (as well as OM). Mum hasn't rushed introduction and is being tactful about it, however, given the timing I do wonder if its related, even subconciously. FWIW, DS2 has repressed memories of before we separated. He says the only time he can remember me living at the house was the day I said I was having to move out.

I tactfully suggested this to the SEN teacher, without going into the gruesome details or revealing parties, however she believes this has no bearing and that (her words) "he would have moved on from that by now".

I'm not saying he might not have ASD. I support the assessment. But I'm uneasy that there's so much focus on ASD being the be-all and end-all here and no attention being paid to DS2's feelings and mental health and the situation being a possible cause. I wonder if he should have counselling - again, school and mum handwave it away. AIBU?

Bear in mind, they haven't diagnosed or properly assessed him. They've made a suggestion and a recommendation for assessment.

Maybe it wouldn't hurt to get a proper assessment done so that you have proof one way or the other?

Maybe when he is being assessed, you can ask the psychologist about it. There is a whole team involved, so you will be involved too. If your son needs counselling, then maybe they can recommend someone suitable for your son (if he has ASD).

I would suggest some counselling for yourself as it sounds like a very stressful thing to go through. Good Luck.

Thanks!

The problem we have is that the waiting list is very long. It could be months before he actually gets seen and then we've been told by GP they would need to assess over a period of years to rule out any developmental lags, etc.

SEN teacher seems to believe we can get a fairly instant diagnosis, saying they need to get it as soon as possible, so not sure who's correct?

Just to add: DS2 was assessed by a GP a few years ago, but she concluded he wasn't a candidate for assessment. The school have now overuled that decision, however, by supplying a written note demanding action.

I would suggest some counselling for yourself as it sounds like a very stressful thing to go through. Good Luck

Thanks! That's probably true, however don't feel I'm in a poisiton to afford it at the moment. I've been lucky to have very supportive friends and family, though. :)

I think the process for assessment varies in each area. My son is nearly 3, we've been waiting nearly a year to be seen but next lot of assessments are much quicker. Next health board in the town over from us, I've heard it gets being diagnosed a few months after referral. Next town over, a few years

Just wondering, is it possible he does have ASD but the behavioural side of things are only manifesting now as they've been 'triggered' by everything going on? My son does have it but doesn't really have meltdowns.

It's a shock so take your time to get around it all :) and maybe speak to your gp again and I agree that it could be worth him having counselling after dealing with all this. You're his dad so you're more than entitled to look into this yourself if you feel he warrants it. Good luck :)

You say your son was assessed a few years ago by a GP...so whatever is going on, has been going on for a number of years already then? Surely, if this is the case, now would be the time to get outside agencies involved. 'Something' is clearly an issue...saying 'it never happens on my watch' sounds a little disingenuous to me, honestly. It's happening at home AND at school, so it IS happening. Are you also saying that the school have not boundaries? I can assure you that won't be the case.

Yes my 5yr old has just been diagnosed and we began the process at 18 months.

About 8 appointments in total over that period of time. Not a quick process at all

GP can't refer for ASD Assessment, it has to be via your local Speech & Language Drop-In at a children's centre (even if speech & language itself, isn't an actual concern specifically).

Op I think you have sadly addressed your own points in your initial post. He will have less outbursts with you if you do set more boundaries, children with ASD, especially high functioning Aspergers respond better to the understanding rules and having clear guidelines. Also change is a major stress factor for them therefore a new adult in mums household could be causing more issues. I think given SEN psychologists are very conservative in making a diagnosis your son is on the ASD spectrum. However having the diagnosis now is a good thing as he will get the support in school

Even if it's not ASD, it's something. It's not normal to have lots of meltdowns even in cases of separation, so your son may need extra assistance anyway.

I think it's good to be cautious. Nobody should rush into diagnosis, but at the same time a bit of early intervention could avoid future problems.

About him having more meltdowns with his mother, this is normal for kids with or without ASD. It's not necessarily about setting boundaries. Just the mother always cops the worst of it.

Sorry I should have said the school should refer to the local authority for a EHC plan before making any changes to his education

Thanks for the replies everyone - they've all been really helpful.

Just to pick up on my comment about boundaries: I mentioned that only to pre-empt any accusations of being a "Disneyland Dad". I'm not saying the school doesn't have boundaries - I'm sure they do! However, I'm most definitely not a parent who just lets them do whatever they want when they feel like it. I make sure they do their homework, etc (as does their mum).

About the earlier diagnosis: DS2 suffered meltdowns in reception and we were encouraged to go to GP as ex-wife has relatives with autism on her side of the family. The GP assessed DS2 but felt there weren't sufficient ASD symptoms beyond the meltdowns to justify referral. When DS2 entered Year 1 things resolved themselves spontaneously and we put it down to DS3 appeaing on the scene (who has always been a bit more mum's favourite) and/or a teacher DS2 got n better with.

That said, it's interesting what a PP said about ASD kids preferring boundaries. DS2 has, almost paradoxically, been like this. The Year 1 teacher was much more strict and firm yet he absolutely loved her - compared to the Reception teacher who came across as very sweet-natured and nice!

Sorry I should have said the school should refer to the local authority for a EHC plan before making any changes to his education

Thanks - they could well have, however it might be worth asking after. I've been given some "actions" they propose to take, however the majority tend to be geared toward making special allowances as opposed to boundaries, per se - for example, at lunch he is given a special table so he can take as long as he likes to eat or that tables are equipped with a book they know he will love (presume the other kids have to make do with what they find!) This is what confuses me too - if (sensitively applied) boundaries help, then I'm concerned many of the steps they are suggesting do the opposite - they're more handing him with kid gloves to stop him getting stressed.

They will be doing these things to try and reduce his anxiety levels. It can seem a bit like pandering from the outside but if it means he is calm enough to do his learning then it works.

I've worked with a few children that have no formal diagnosis but benefit hugely from strategies that you would use for an autistic child.

Ds1 has ASD. Took 5 years to get a diagnosis. It was not a quick or easy process as a lot of parents who have High Functioning children experience.

School absolutely can and should be making reasonable adjustments to his education. This should happen for all children regardless of whether they have SEN or not.

An EHCP is again an arduous process and very hard to achieve. Evidence is required that his education is suffering significantly and that school have done all they can to make adjustments.... which is what they are seemingly trying to do.

It's best to work with the school and start documenting what the school are doing to help, what works, what doesn't etc. I can't stress enough about getting evidence.

He definitely needs counselling. My primary school had a counselling service attached to them. Have you asked your school?

the school doesn't diagnose. the diagnosis process takes years given waiting list times and no harm at all is done by the school making accommodations for possible ASD.

people with high functioning ASD do not have "mild" ASD and may still need a lot of support to thrive. They may be good at masking their symptoms but if their difficulties therefore go unnoticed and unsupported the additional stresses they experience can lead to really serious problems in teenage years. If your DS does get an official diagnosis then do take it seriously.

it is quite normal for people with ASD to have melt-downs in some places/situations and not others. e.g. an ASD child may be a model of perfect good behaviour and hard work at school and then spend evenings at home in total meltdown from the stress of holding it together all day. The child will be (probably subconsciously) balancing how important it is to hold it together and simulate normality in each context, but it is impossible to keep up that level of control 24/7. the circumstances where meltdowns occur ironically may be more frequent in contexts where the child feels most safe and supported and free to express the stresses they are experiencing. given the circumstances of your family breakup it doesn't sound at all surprising to me that a child with high functioning ASD might feel a stronger need to mask their levels of stress when coping with the instability of their time outside school, and would therefore need to relieve some of that pressure during school hours.

The diagnosis process will identify if there is something else causing the issues. it may take a while. take the opportunity to read up on the topic.

To the person that said about getting and EHCP - they are for children with a high level of need. It sounds like the school are well able to accommodate this child’s needs so an EHCP would not be necessary.
Also to the poster who said about going through speech and language, that is not the way it is done in my area and there is great differences across the country with the route to take when ASD is suspected. It is odd that there is no standard way but it comes down to how services are funded in each area and who has taken on the role of ASD diagnosis.

I’m surprised the school hasn’t also referred you to CAHMS, unless they prefer to referral to CAHMS to come from a GP? A GP isn’t trained to make such a diagnosis or treatment/educational recommendations, this should come from a clinical child psychologist. If referral time is an issue, a private clinical child psychologist specializing in developmental disorders can provide a clinical assessment and report, which can be used to inform the school of the level of support required and potential educational accommodations to get the ball rolling (maybe to put your mind at ease) and save you from additional years of confirmatory data collection.
Equally CAHMS provides therapeutic services for outside the classroom, for all involved. It’s a difficulty thing to go through, diagnosis and seeking accommodation, let alone the other upsetting events in your and DCs life.
Sorry this has happened and I hope your DC finds the support required as quickly as possible.

The school has identified that they feel there could be a condition that needs investigation. Your ex wife agrees, I think you said.

Whilst a diagnosis can take a long time, what you need to do is to work with the school to work out how these meltdowns are going to be managed in the context of the school setting. The school will need to make a plan and use strategies that will hopefully alleviate some of the unwanted behaviour.

The local authority won’t look favourably on an application for an EHCP that shows no evidence of what strategies have been implemented and how successful or not, they have been. It’s in everybody’s interests to try to make school more manageable for your son. If things work at home for you, perhaps using the same type of ideas and boundaries might help at school.

I'm surprised the teacher has mentioned a specific condition. They're not allowed to in the 2 LA's my son has been under at different schools.

As a PP said, the process for diagnosis varies greatly between different local authorities. I work across 4 and each has a different process, so please don't get hung up on that. Just follow the procedure for assessment and diagnosis of your own. To the PP who said possible diagnoses should not be disclosed to parents, none of the 4 I know have that policy, in fact each one requires parental permission to proceed and encourages transparency between all agencies. I would not be impressed with anywhere that did not discuss concerns openly with parents and would suggest they're skating on very thin ice, unless there were safeguarding concerns for the child as a result.