Caught the school lying to us and GOSH about son's progress

[LolafromA]

Hi everyone. Posting it here as I need an advice. Thanks in advance.
Long story short… My son who is now in Year 4 had speech delay. While still in Nursery we were told by SENCO to sort out the funding and apply for an EHCP. Which we did. Didn’t get the place in the same school so we got accepted to another one. Of course, the new school did not need our ‘funding’ and supported our son using their SEN budget. Now we understand how SEN budgets work so I know we got tricked. During Reception year my son’s speech was developing rapidly. He was a sweet boy, very compliant, had friends, loved going to school and enjoyed learning despite speech problems. The teacher described him to me as having a ‘math head’. Which made sense since my brother is Physicist and my husband Cambridge Uni graduate (Astrophysics).
We got a place eventually at the school that we wanted (that advised us to get an EHCP) and my son started Year 1. He settled well and we received positive feedback about his academic progress. The teacher said he just needs to be more independent but they will work on it.
Now a month later during Parent Teacher meeting I mention to the teacher that my son is being assessed by GOSH (2nd opinion) for High Functioning ASD and I will be bringing forms to fill out about his behaviours etc. The teacher seemed surprised that our son has been diagnosed with ASD (my son is in Year 4 now and I am still not 100% sure but at the same time I realise that I am probably surrounded by aspies in my family (math gene is strong). My brother reminds me of Elon Musk a lot - very inteligent, based in Silicon Valley, studied Physics, Optical Engineer, geeky etc.
Now since I mention ASD, things change at school. All of the sudden I am invited for a meeting with SENCO, teachers and S&L Therapist and told my son needs one on one in Math and English lessons four times a week, lego therapy, of course S&L therapy. The amount of funding needed I was shown £12k costs.
At the same time my son (Year 1, has just turned 6) was assessed by GOSH professionals and the tests showed my son’s spelling is as a 9yo, Math - 8 yo and Early Reading Skills - 7 yo.
Because of Covid lockdown I found out these results only at the beginning of Year 2. It all made sense to me because I could not understand how this clever boy needs so much support. Remember I had to teach him during lockdown myself.
Year 2 started and I would ask my child if he has a TA. He would say that no and he is learning together with the whole class. I started questioning TA arrangements with the school and was told that my son has TA now. Later turned out TA was spending only 20 min twice a week with my son. Smoke and mirrors I know… Then another lockdown started from around Xmas. Again I got to witness my boy how easy he is to work with, how amazing memory he has, reads a text - answer questions correctly, comprehends etc So after the lockdown I started calling Local Authority as I felt we are being exploited. His EHCP was bringing the school extra 3k (top up funding). I ceased EHCP at the end of Year 2. Speech Therapist was giving him identical English lessons that I had to teach my son during lockdown myself. So I realised it’s another ‘smoke & mirrors’. The school tried hard to pursue us to keep an ECHP however I followed my gut feeling and told them to stop all the support as my child doesn’t need it. And guess what? My son had a good Year 3.
Meantime GOSH sent Educational Psychologist to observe my son (beginning of Year 3). Around Xmas I get a report from
Gosh and I can’t believe what I am reading. See below.

Cognitive and Academic Development
L cannot maintain independent learning without support and prompting. Mr X reported that L is reading at approximately a year 2 level (1 year behind). However, comprehension is a significant struggle; L struggles with inference and even simple retrieval of information he has read. Even with modelling, he struggles to answer basic questions.
Friendships and Relationships
Mr X reported that L had one friend, and that if that child were absent one day L would probably be on his own (e.g. during breaks), as he would struggle to join in socially with the other children. Mr X said that L does not have good social skills and only has one friend.
Mr X informed me that L previously had 1:1 support most of the time but now does not. Mr X feels that Lukas does need 1:1 support as he is unable to work independently without support.

Meantime a month before that above feedback to GOSH, SENCO’s reply to us:

In terms of verbal interaction, we would be looking closely at how he is doing so in the classroom.
There is no dispute that he is interacting well with his close friends in the playground. I also added into the annual review report about vour observations of him in the playground with other children.
Indeed, LA may feel that the TA support that L requires can be met by the class TA. I have made it clear that he does not need full time 1:1 in the classroom. It is quite normal to prompt other children from time to time, L just needs a little more than this. Mr P (Year 2 teacher) said that L is a lovely child to have in the class and easy to work with.

So after reading the GOSH report I go and speak to Mr X and ask how come my son’s reading is a year behind. Mr X replies ‘Don’t worry about L’s reading. His reading is fine!’ I said ‘Well I have just read Gosh report and it said this and this. Mr X suggests to speak about it all via Zoom when Parent Teacher meeting happens.
PS My son always had a group of friends and is a popular, soft spoken boy, polite and its all written in the End of Year Reports.
So during Parent/ Teacher meeting Mr X tells me my son scored above average in comprehension tests, has a group of friends, very good in mental math, has good vocabulary etc
I contacted GOSH and emailed all the correspondence (evidence) from SENCO regarding my son. Emailed all the evidence of how my son scored top mark 40/40 in Phonics and what Mr X said about his comprehension, friendships etc
GOSH right away arranged joint Zoom meeting with Mr X, SENCO and me. And all lies have been exposed. Complete silence from SENCO! They did not even try to defend their previous feedback.
GOSH said kids like L fly under the radar, his ASD case is subtle, he will do well academically and when he is a teen he may find it harder to fit in, may get depressed.
By the way GOSH Educational Psychologist in his report said he doesn’t see any anxiety in my son and that L is a very happy child from what he observed during PE lesson. Also at the end of Year 3 Mr X (Year 3 teacher) reported my child as very confident.
So Year 4 starts (this school year) and during Parent/ Teacher meeting Mrs F starts throwing hints at me how L has ADHD. I know.. lol I explained to her that he definitely does not. I studied and educated myself on both - Asd (subtle cases) and ADHD. SENCO gets called in. Complete silence from her. I leave the meeting saying how it’s time for us to have a meeting with the Headteacher which we did. I was furious! We had a meeting, brought up conflicting feedback to GOSH and was told it was Mr X’s opinion at the time about my son’s comprehension. Basically they had an answer for everything eg it was teacher’s opinion.
So I ended up requesting Subject Access Request (all educational records of my child since Year 1). Have a look at the image attached. My son never had comprehension problems!!!! In fact he scored high average!
My question here on Mumsnet would be - what do I do now? Report the school to Local Authority, Ofsted, Dept of Education? I complained to the Chair of Governors but received a reply with little answers. Mainly he advised to contact LA and was opologetic.
Every time my son has assessments now I ask the teacher Mrs F to email me his results. My son is excelling academically, she said he is mixing with the boys and girls, has a close group of friends which obviously I always knew since I organise playdates, meet with his friends/ parents in the playgrounds. I see how he interacts. You would not even know he has ASD but as I mentioned earlier, lets see how his teenage years go. Maybe that’s when I will see the symptoms.
As of now I need a realistic advice on what can be done to expose / stop the school doing this to another family.
Thank you.

Situations like this are exactly why I am not a SENDCo anymore and why I would never pursue it as a career again.

Parents want an EHCP but don't want to contribute to writing it, disagree with what the school and professionals say and some don't even turn up to meetings or read reports. Meanwhile, they're complaining their child isn't getting enough support. Add in the occasional teacher who also doesn't understand the importance of timely, detailed information and you've got a recipe for disaster. The poor child never stands a chance to make progress!

But he does have some elements that are only developing, including working independently and initiating work, he also isn't consistently doing homework, behaving acceptably and communicating effectively- if he was academically flying, everything would be consistent- there are many for whom have had a lot explained by a diagnosis later in life - many have struggled with being different and not understanding

This is spot on! :-) Thanks for putting it so clearly!

In the kindest way op you see everything very black and white don't you.Differing professional opinions, and even the same person's opinion changing over time, doesn't mean someone is lying!

I really don't think GOSH could/would have diagnosed ASC based on information from school alone. In addition, as others have said, Aspergers is no longer diagnosed, and even it it were, a diagnosis of Aspergers does not necessarily mean that a person will not have significant difficulties.

It is so difficult to get an EHCP. You would be absolutely mad to give it up.

I think you are in denial about your son's potential needs. In my experience year 5 is when the wheels very often come off for autistic kids.

I do also think your communication style is very unclear and may well have contributed to misunderstandings with the school. Is english your second language? Could you consider organising your thoughts into bullet points before emailing school/professionals?

I obviously talk to other mothers. And somebody’s daughter is bad at Spelling. Some kids had online tutor for Math online lessons during lockdown (Year 2). Meantime my son only had S&L sessions (Therapist would give him identical English lesson for example about Verbs). And I would sit next to my son wondering what’s the point to give these duplicate grammar lessons? So I mentioned this so S&L therapist. I said do you realise he gets duplicate lessons. She said nothing, just smiled and carried on taking notes (this was Year 2 lockdown).
The point I am making that there are many kids who are not necessary good at Maths or lets say spelling. But those kids get supported regardless! So why do I have to bring the funding if my child needs a little bit of prompting during writing?

Year 5 was when DD2's school finally said "We have a problem". I had been saying there was a problem since year 1 (and had been raising ASD traits since preschool), and had to move schools twice. She joined school 3 in year 3 and they did well with her through year 3 & 4. When they moved her to the year 5/6 class, she completely dissolved and couldn't even write a sentence independently. They worked really hard with her, scaffolding and gradually withdrawing. She finally got her ASD dx in year 7 due to waiting lists.

Your son is intelligent, he is popular, go have a cup of tea and be grateful for those two things.

You ask “why do I have to bring the funding?” But you aren’t funding anything! It literally has no detrimental effect on you at all so what’s the problem?

I truly don't understand where you are coming from OP.
EHCPs are like gold dust. The MAAT pathway for autism diagnosis has a current wait of two years from referral to assessment.
You are lucky enough to already have both and a high-functioning son.
He may well do fine in his SATs and his transition to secondary but with budgets being as they are, even with a learning plan, there may be less support available or support on-paper only. And he hasn't hit puberty yet.
If you think the original diagnosis was too early and incorrect, you could put him on the pathway now to be reassessed before year 7.
But it's a label with no particular downside: will open doors for reasonable adjustments, exam adjustments etc
The only label with consequences is treatment for anxiety wrt entry into the military.
I can appreciate upset at possibly being gaslit/lied to - and they may have simply been covering their arses to make sure they had met perceived needs - what are you wanting for the future? What do you have against additional funding for your son? (tbh even if not used for him I know how pushed school budgets are, that's why they ask parents to apply for FSM if eligible for the PP budget).
Choose the hill upon which you want to die. Move schools if the trust has gone completely - but I'd be avoiding that wherever possible if relationships, teaching and engagement are solid. Adaptive teaching is more important than anything else.

Because most schools don't have a TA in classes as they get older, 1 teacher 30+ children, not much time to prompt, check in, priority, those children academically struggling - without an EHCP that prompting legally doesn't have to happen, he can be left for the entire lesson unsupported. No EHCP = no legally required support, best endeavours EHCP = legally required support

Do you genuinely think the school have lied about your child having ASC traits, purely to secure funding for a whole class TA? Assessments tend to be triangulated. School assessments are only 1 part of the picture so this is a really unusual view to take.

I sympathise with getting confusing messages but I disagree that you or your son are being "exploited". Even if the school has exaggerated his needs to get more funding, they may have done this in a "just in case" frame of mind: every diagnosis has a margin of error and it would be worse to accidentally downplay his needs. If in the end, that funding also benefits other children....Good?! You're acting as if they are robbing your own personal bank account.

Also, and I mean this in an affectionate way but your stream-of-consciousness narrative style really reminds me of my own dear mum. She's extremely intelligent but comes across as very incoherent (she's also ESL so uses english idioms a bit "off" too) and so medical/educational professionals sometimes dumb down their explanations to her, which would then lose clarity. When my mum tries to explain something, she'll jump around from assertion to (very colourful) anecdote and never provide a summary or "topic sentence". Sometimes it isn't clear what point the anecdote is even trying to illustrate.

This in particular is just like what my mum would say!

She cross examined him with all kind of tests. Like eg the wind blows the man’s £5 note to the sea, oh no! What will he do. My son goes ‘It’s not a problem because he has more money in the wallet in his pocket!’ Again interesting. Who do I listen?

I'm not sure what the solution is, like a pp suggested, write in bullet points when you're writing to professionals. Try to say summary sentences every once in a while. It would be a shame if the professionals underestimate you (as they always did to my mum) because of your communication style, and thereby dumb things down so you're left unsatisfied with what they're trying to tell you.

OMG this! The school must be fed up to the back teeth with you. Chill out.

Instead, spend time sorting out how you can communicate with people without rambling- you're making no sense and are really annoying, never mind ignorant about additional needs.

Sorry I come across that way. English is my 3rd language.
I normally write an email with what I want to say and my dear husband makes it look professional and good.:-) He is very good at it.
I would also like to mention that kids in my home country start school at the age of 7 like in some/ most Scandinavian countries. It’s totally normal to start Year 1 at the age of 7 abs have idea how to read. Therefore I guess I have less expectations for my child.

*have no idea how to read

In terms of what the school wrote, my guess is that they were trying to support you in getting help for your child, which you seemingly felt was needed. The process is such that if you don't maximise the difficulties being experienced, you will get nothing.

Don't apologise honestly I didn't mean it in a bad way, it reminded me of my mum who I love dearly and I haven't seen her in a few months and I miss her - but yeah, I remember teachers and doctors (esp men) used to talk down to my mum and I'd silently seethe in her defence. She's got a strong foreign accent and her rambling way of talking with random (seemingly irrelevant) anecdotes made them think she wouldn't understand plain scientific language.

But yeah that's all a side issue I suppose... I think my main point (and I think some previous commenters have said similar) is that it's only a GOOD thing if the school overestimates how much support your son needs. 1. He gets the support he needs, and thrives. 2. There's some funding/TA-time left over for other children, at NO personal cost to you. Win-win. Remember, your son is thriving at this school by all accounts. I think you should be very grateful to them.

This thread is weird. You don't get diagnosed with aspergers anymore and nobody sane gets rid of an EHCP. Schools have to pay the first 6 grand of the damned things so can't see any school seeing them as financial gain.

Rabbit away here.

I think it would help if you separate out autism from academic attainment. You are correct in saying that lots of autistic people are highly academic.

It is also true that many autistic people struggle hugely with loud noises, smells, bright lighting. It can also be difficult to have to work hard to follow conversations, to feel that you are constantly misunderstanding what is being said, or getting it wrong.

These difficulties can lead to significant mental health issues as children get older. As I said above, year 5 tends to be when these things become evident. At this point a child may well start to try protect themselves by not wanting to go to school. You do not want to be starting from scratch to get support in to create a manageable school environment at this stage.

None of these difficulties mean that your child won't also have strengths. This goes beyond how they manage in school, I think you need to start to try to understand what their difficulties are and how they might make life more complicated as they get older so that you are able to support him.

OP, do you feel that your DS has been negatively impacted by having had the (now withdrawn) EHCP?

Obviously, your child may be fine, it is not a given that he will struggle with his mental health. But it is extremely common and very distressing for autistic children to have a very difficult time and you would be wise to make sure he has as much support as possible.

The point I am making that there are many kids who are not necessary good at Maths or let’s say spelling. But those kids get supported regardless! So why do I have to bring the funding if my child needs a little bit of prompting during writing?

Ok, say the EHCP isn’t needed, though that seems hugely unlikely given how hard they are to get.

What difference does it make to you that your son’s school receives extra funding that is allowing them to pay for a TA in his class, from which he is and will be benefiting.

It isn’t costing you anything.

I feel like he hardly benefited from having an ECHP. Remember the school told us to sort out the funding while at Nursery and we did that because we were under the impression that this is how we unlock the funding (6k) required for S&L therapy. During Reception year at school no 2 SENCO said we are good to pay for the speech therapy from our own SEN budget. Then I thought so what was the point in applying? When my child got diagnosed with ASD (summer between Reception and Year 1) I was asking doctor/ speech therapist more questions, like why do you think my child is Autistic? One of the answers was ‘Well, he has an ECHP!’ I was like but an ECHP is only so my son would get more speech therapy. The speech therapist was like ‘What?’ I think that is why I have this negative perception of an ECHP especially if the child needs Speech Therapy only. Also note that Nursery staff (School no 1) commented that my son can’t be autistic, as he follows instructions, understands everything etc Speech therapist who worked with my son since Nursery until end of Year 2 said to
us ‘Normally I meet a child and I know straight away what’s wrong with him but with your son I have no idea.’
There was a lot of debate between these professionals if my child has apraxia (when the signal gets lost while traveling from the brain to the mouth), if he has Language Disorder or if he has ASD. Eventually I got tired of all those debates discussing my son and thought just leave ASD diagnosis if you see something subtle and let us live.
GOSH paediatrician did make a comment when they were in doubt regarding ASD saying ‘Well, we all saw how he plays with his baby brother in a home video.’My son was in the cot next to his baby brother laying next to him, smiling to him while looking into his eyes, stroking him. I was filming it secretly.

My son doesn’t care about routine, doesn’t have sensory issues. We travel abroad every year since he was 12 months old. He was just a happy baby, interactive etc What I see is that he is sensitive, eg he will start crying over small things (I know ‘aspies’ find it hard to regulate emotions). His voice was very high pitched, now it’s changed but he is still very soft spoken. Voice tone is monotone, quizzical tone sometimes. His face does have lack of expression. I agree with things like that. If this is Autism, let it be.

I am confused. However, I wanted to add that the school is correct regarding PIRa reading tests based on my experience. Children can do well on these compared to national tests. NFER are more aligned to the national tests. The end of y2 test (SATs I assume?) show that he was below the expected standard. It is possible that PIRA could have given the impression that he was at the expected standard, but wasn’t. Therefore, I’m not sure why it is thought that the school were saying he was doing worse in y2 than he was.

He may have scored 40/40 in the phonics screen but it is very possible for a child to be able to decode confidently but still very much struggle with comprehension (and vice versa). The 40/40 does not tell you how well he could comprehend or how fluent he was. Not meeting the expected standard at y2 does show there was an issue somewhere.