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.

GOSH used word Aspbergers. The doctor said ‘Have you heard about Aspbergers? These kind of kids come across naughty, they do what they want to do, they do well academically! And the doctor said ‘We see something subtle, but let’s wait and see how he does. I wasn’t pursuing a diagnosis or EHCP.

Are you embarrassed/ashamed that he was considered to need an EHCP? Even GOSH have said to you that children like him fly under the radar until they hit crisis point - at which point it can be too late as they can drop out of school very quickly, however academically able they are. Except saying he only has 1 friend is the only possible misinformation and they have even said if that child is off it can affect your child. Children ag year 4 are still very open, in the next few years, they change a lot and are not as open. It is not unusual for even a child someone isn't particularly close to to be warmly greeted at a party.

As you know schools are struggling for funding, you could have just let the EHCP run, you didn't think he needed it, so it didn't matter if it was going to your child, there is probably another child in his class who could benefit (SEN funding/ EHCP is very difficult to get, so unless the evidence submitted by professionals (not school) was a lie, it seems strange that he got one without a genuine need, children can be very academically able and have an EHCP, they are often the ones who struggle the most to get one and support, because they are academically able). I hope when he is 15 you don't regret the decision (or at 11 when you can't get him into a smaller secondary, as you lose priority for a place and he ends up in a 2000 pupil secondary which could completely overwhelm him).

But your input would have been sought in both the diagnosis and the EHCP, you can't have been a passive bystander in either.

It is strange GOSH diagnoses Asperger Syndrome given it is now all encompassed under ASD, and even if it wasn’t DS has a language delay.

If you weren’t pursuing a diagnosis why did you go for an assessment in the first place? And if you didn’t pursue an EHCP why did you request an EHCNA?

Exactly! The school said my son needs 12k of support.(Mid Year 1) To me it didn’t make sense! But to fast forward he never had that amount of support. What he needed mostly was speech therapy in Year 2. By Year 2 he was fluent! By exaggerating his needs the school got £3k top up funding. Half of it went God knows where. Speech therapy session costs £70, it is once a week and it involved other kids too (group sessions funded by my son).

Sorry, I meant he mostly needed speech therapy in Year 1. But his speech and social skills developed very well during Covid lockdown not that I did anything in particular.

So did you get a breakdown of what they were spending money on

39 academic weeks of the year x £70
£2730
Even if it cost less because it's shared, just having the funding to support class TA, that money wouldn't go far.

You are so hooked on the money when you should have been ensuring the EHCP described all needs and ensured there was provision to meet every need. The school's input into the securing and the writing of the EHCP would have been minimal. It would have been written from the reports from a SALT, Ed Psych and OT as minimum.
FWIW I look back at dd's y3 and y4 as the easy years, yes I expect her TA did a lot of supporting other children because dd was thriving, there were plenty of years to follow where that wasn't the case but at least the support was there to catch dd when needed. You have denied your child that safety net because you didn't want the school or another child to in any way benefit from resources that were there that your child didn't need at that moment.

This is the most mean thing I think I have ever read!

Most people would be delighted that the school could get extra funding for their child's education, and if their child didn't need that money at the time, would be glad the school could use it in another capacity to benefit other children who may not be able to reach the ridiculously high benchmark for funded SEN provision. The money has a knock-on effect of benefiting the whole school community and potentially positively changing some children's lives. But you... It's not like you are bothered the school aren't using the money for your son.

I have to ask: what benefit do YOU get by stopping the EHCP? I am struggling with the cold-heartedness of your attitude.

You do know that speech therapy isn't only there to make sure a child can speak fluently don't you? It's also there to support social communication, to check on memory and processing difficulties as well. Dd is 20 now, has spoken fluently since she was three or four she still has speech therapy needs and 45 minutes a fortnight regardless.

I honestly think that you have an idea of what children with an ASD are like which is very stereotypical. It is a spectrum disorder and quite possible to struggle in some ways and not others. As I said not every one is a maths genius. Some might be popular, some might be loners. My son was always the first person to be invited to join in quizzes at school but hates maths. He struggles socially. He misunderstands language, doesn't get subtlety. The point of having a TA is to assist where necessary. He might need help with some features of school life but not others. My adult ASD can't physically write, but he can type an essay. He's not stupid or lacking intellectually but he will always fail to fit into society. I think that you should just let this go OP. If he gets on at school fine but if he struggles then the TA will reappear.

I think the doctor tried to guide us where to look as I was too focused on classic ASD and kept saying, no, this is not my child described here. When she said Asperger's I straight away thought of Mark Zuckerberg..:-)Later I listened to Tony Atwood podcasts and they were eye opening!
The doctor talked about how Bill Gates has it, how Elon Musk has it. She said, you don’t need to worry, your child will be OK! This is not a disability!
Now, how I ended up taking my child to be diagnosed? So it all started with GP. I went saying my 3yo child needs speech therapy, he understands both languages but doesn’t speak (just pointing and lots of talking language we don’t understand). GP referred us to a local clinic where they checked my son’s hearing, Occupational Therapist saw no problems at all after testing him. While the paediatrician suggested it would be right thing to do - to put our child on a ASD pathway so we do not miss anything. 2 years later we got invited for an appointment and the speech therapist did Ados on my son. He met the criteria acording to her. Meantime I wasn’t convinced my son has ASD and requested 2nd opinion. And we got referred to GOSH. They also agreed they see something very subtle (mannerisms that we normally pay attention to). Like eg my son was slightly rocking on the chair in one of home videos. Has monotone voice tone, things like that. We va were told by GOSH he will interact with others, he just will do it a bit differently (for example will be literal, may find hard to read between the lines). The doctor also said you don’t see things like that on the kids because everything is allowed for them. It becomes more obvious when they are older, it’s harder for them to fit in, they may not read facial expressions. Oh, actually it’s one of the symptoms of my child - lack of facial expressions.

What is your actual issue OP?

Is it that

1.your son's needs have been exaggerated

AND

2.as a result he received extra funding in his EHCP

AND

3.that any interventions/1:1 support didn't actually happened ?

*mannerisms we don’t normally pay attention to eg slightly rocking on a chair (I should read my post before posting, sorry).

But DS wouldn’t have been diagnosed with Asperger Syndrome as he has a language impairment.

This is not a disability!

I’m amazed GOSH would say such a thing. In order to be diagnosed one must have “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” which “limit and impair everyday functioning”.

In the legal sense of the word autism is classed as disability as the Equality Act "defines a disabled person as a person with a disability. A person has a disability for the purposes of the Act if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities” (S6(1)). assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/570382/Equality_Act_2010-disability_definition.pdf#page9

The diagnostic process was you pursuing a diagnosis.

Yes. You are correct.

So two different assessments have recognised your child is ASD but you don't think he is, is that it? Were you hoping that GOSH would have rubbished the earlier assessment? Getting rid of the diagnosis won't get rid of the needs and might just get him different labels such as naughty, weird, stupid instead. Much like removing the EHCP doesn't mean your child is too smart to need one it just means that the school are no longer legally bound to meet your child's needs even when resources are scarce or non existent.

Op, are you also on the spectrum either diagnosed or undiagnosed?

I'm genuinely struggling with what you want. You are unhappy that you feel money isn't being spent on your son. You don't think he has ASD or do you? You don't feel he has a disability? Are you ashamed to think that he is different or what?

So your son did participate in speech lessons in school. He didn't fund them. His EHCP funding paid towards them.

You think the school exaggerated his needs to get extra funding which was then used to support other students.

Where were GOSH in this - do they consider your son to need additional support?

Sorry OP but this is mad. You are seeing autism as either a stereotypical view or Asperger’s (which wouldn’t have been diagnosed), with no spectrum. You’ve stated clearly that your son has many mannerisms connected to autism. He has been diagnosed twice. Why are you adamant he doesn’t have it?

There have been so many professionals involved in both diagnosing your child and assessing his needs and ensuring that he is legally able to access the support he needs, and you are just shitting all over all of it. Sure you know your son best but you do not know how able he is to cope and engage in learning when you are not around. My son is easy for me to raise too - he still has significant disabilities (and yes autism IS a disability). Just because you love him and he’s no trouble for you doesn’t mean he doesn’t have autism. That’s why professionals diagnose, not parents.

So your home is bilingual?

I think what GOSH mean that are many successful Autistic people - Anthony Hopkins, Keanu Reeves, Elon Musk, Steve Jobs, Warren Buffet and many many more. According to Tony Atwood you don’t need diagnosis if it doesn’t affect your life. Just recognising those traits is enough. Many people carry on living their lives without even knowing they are Autistic and getting late diagnosis just all of the sudden explains it all! Bill Cross (The Bond King as the press calls him) self diagnosed himself after reading some book where the character had Asperger's. He was like 70 I think. There is an interview on YouTube of him talking about it if you google him. I noticed the press prefers to call these people as having Aspberger’s not ASD.

Sounds like you are in massive denial about his potential needs more than anything else.

Just because he is "easy to raise" doesn't mean there aren't other challenges in a classroom that you don't see.

The press use Asperger's incorrectly too. It's part of ASD and not used as a separate diagnosis these days.