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.

So as I mentioned my son comes from bilingual home. He understood both languages but spoke in his own language that we could not understand. His S&L therapist thought it was verbal dyspraxia (when the signal from the brain gets lost). Despite his speech difficulties he enjoyed going to school, had friends and loved learning. We almost were seen at Nuffield but apparently NHS speech therapist disagreed it’s dyspraxia. NHS S&L therapist told me in person ‘I have very similar child to your son and he is now fluent and he is doing very well.’ Meantime from school S&L therapist I felt pressure to get my son diagnosed with something.
So while in Nursery the school told us to get the funding sorted so he could get ‘more speech therapy’. So we did! The plan was made for his Speech only. And during Reception year his speech was developing rapidly. The support continued for Speech only but I couldn’t understand why this other school were not bothered about ECHP funding. SENCO was happy to use her school’s SEN budget and could not understand why we had applied for an ECHP. So we were back at the original school (school 1) to start Year 1. My son settled well, made few friends, the teachers were happy with his Phonics, Maths and even writing (this was school SEN meeting) and said he just needs to be more independent but they will work on it.

So to answer your question, yes, the plan goals were met. And my son was pretty much fluent even in Year 1. He would make grammar mistakes here and there. By the end of Year 2 I noticed he was so good with grammar. After the lockdown he was back at school and S&L therapist said, oh, I noticed how confident L is!
During Year 1 lockdown I noticed how my son can sequence the pictures in the right order after reading the text only once. How he can answer questions correctly after reading the text only once. I told this to his school S&L therapist and she acted so surprised, almost like she didn’t know. Then at the beginning of Year 2 she sent me an email saying ‘I don’t know what happened to L but he answered all the questions correctly! Anyway I realised were were a bit played and ceased an ECHP at the end of Year 2. So during Year 2 my son had group sessions and I was told how confident he is during those sessions. So he developed these skills while we were locked up as it was Covid times. He did well during lockdowns and according to school I did a very good job.

And yet GOSH still saw “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” which “limit and impair everyday functioning”.

So reception school were wrong for using their SEN budget and not asking for EHCP.

SALT were wrong because they were teaching him the same stuff he'd done before.

First place to diagnose ASD were wrong because you don't feel he has ASD.

Current school are wrong for

• carrying on the SALT when you deemed he didn't need it any more (did you tell them that)
• using your son's EHCP budget for things you perceive to not be for your son
• exadurating his needs to get more funding

Year 3 teacher was wrong to say your son was being disruptive I class because your son was only doing it because another child told him too.
Year 3 teacher also wrong for disciplining you son by sending him to the head after being disruptive in assembly, because your son has ASD.

GOSH are wrong for continuing the narrative of the ASD diagnosis because they took Year 3s teachers statement about disruptive behaviour as to why he has ASD.

Anyone see the constant here?

So is the ECHP now closed? Or are there still targets on there and are they targets you think are valid? What does your parental contribution say?

The timeline:
I take my son to GP at the age of 3 as he was not talking yet (talking in his own language but pointing to things etc). GP referees us to check his hearing and to see Occupational Therapist. His hearing is fine, Occupational Therapist sees no concerns whatsoever. I am offered to put my son on ASD pathway (I think that’s how it’s called).
A year later we receive a letter saying the panel discussed our son and they still don’t why he is speech delayed (my son was 4). I had no other concerns so we don’t mind waiting.
A year later (end of Reception) we get invited to be seen by my local doctor and S&L therapist. They were apparently helping with the backlog. S&L does Ados and my son meets the criteria. I could tell him having an ECHP influenced the diagnosis but at the same time he met ADOS criteria . Anyway I ask for the 2nd opinion so get referred to GOSH.
GOSH see us when my son is 5.5 and then again for more assessments when my so turns 6yo (Year 1). GOSH is not sure so they say to me ‘We normally don’t do it as we either diagnose or not right away but your son’ case is different’. Dr C said keep the diagnosis now as a safety net and carry on with the speech therapy and let’s see how L does in a year’s time. This was Year 1/ beginning of Year 2. Dr said ‘We all saw how L plays with his brother!’ Probably implying that he would not have those skills if he was Autistic.

At the end of Year 2 GOSH call me and we talk over the phone. We agree for me to send more home videos of L and we agree that Ed Phycologist will come to observe him at school.

During assessments my child was filmed.
The rest you already know from this thread.

It’s been closed because the school at the end of Year 2 could not name special needs my son has. We had joint meeting with LA Ed Psychologist (case worker) and school.

And despite all your posts DS was still diagnosed therefore GOSH saw the difficulties I mentioned.

Well, this is very weird how GOSH explained it to us. The doctor said kids like L fly under the radar as they do well academically and have friends. And he may struggle when he is older. Fair enough. But then from this thread someone said GOSH can’t diagnose on predictions. Maybe they just didn’t want to deal with the diagnosis removal.

Meantime the school was giving conflicting feedback. GOSH arranged joint Zoom meeting and conflicting feedback was amended on the reports. It was about comprehension and friendships.

GOSH was trying to warn you not to be complacent and that your son may well struggle as he gets older. If you had asked dd's primary school would the high achieving well behaved young person they knew need specialist provision they would probably have laughed as she thrived in Primary.
Get to Secondary school and whilst the academics were still not an issue (although they become an issue in themselves as the pressure applied to ensure she got the top grades caused her anxiety to sky rocket) everything else was, the noise, the changes, the corridors, different expectations between classrooms subjects and teachers, dd is quite naive and believes everybody to be genuinely good and kind and many are not and that isolated her outside her small group of friends, in no time at all despite the EHCP the ASD specialist TA supporting her she could no longer attend and we began the fight for independent specialist school where once again she thrived

@LolafromA so it sounds like your son had definite speech and language issues till 5.5 yo and then it got resolved? They kept him on early ASD pathway because I believe with speech and language delays ASD can be one of the factor but in many cases the issues goes away without therapy and some children might need extra support with SALT especially if they are not getting speech enriched environment at home. If it resolves by a certain age then I believe ASD should have been ruled out unless there were other things which caught their attention. This is what my understanding is as per people I know who have gone through the process.
Did you check the SALT report, has it been mentioned that speech and language delay was resolved in the letter? He was put on EHCP because of speech issues but when it got resolved what was done about it? From the way it sounds, I believe in the clinic letter it was never mentioned that speech and language issues were resolved?
I know parents whose children were referred to SALT because of delay when they joined nursery or Reception, once the targets were met the therapy stopped and it led to no diagnosis. You will have to contact SALT for more info and for peace of mind.

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”. If that didn’t apply to DS he wouldn’t have been diagnosed. None of what GOSH said means that doesn’t apply.

@Samee20 OP's child wouldn't have been on the ASD pathway just because of a speech delay he had to be exhibiting other difficulties. The OP's son has had two ASD assessments, a second assessment from GOSH who are considered experts in ASD assessment. Diagnoses aren't given easily and based on one report from a SALT or school it is a multidisciplinary assessment. If GOSH has diagnosed ASD then child has ASD no matter how much the parent wishes otherwise or argues against it. She wouldn't have been a bystander in any oof it her views and experiences would have been sought and considered and still the child got a diagnosis not least because all the instances that she quotes of it not being typical of her very narrow understanding of ASD fit perfectly with a broader ASD profile.

My son never had these issues. I read that kids with speech delay do show ASD symptoms when they are young. ASD could be so misdiagnosed and many parents prefer to wait. I wish I was given this option to wait.
I told you what the Headteacher said to us recently. That she went on a school trip with my son last year, talked to him, got to know him better and saw no ASD in him. She is former SENCO. I don’t think my son would meet the criteria of ASD triage today. As parent I don’t see it.

I asked a person who I know in the medical field how to deal with a situation where a parent doesn't agree with a diagnosis. He said that the parent need to contact the department where your son was seen, speak to the secretary and mention that you need to discuss the diagnosis with the doctor and how they had confirmed the diagnosis. The doctor will be more than happy to discuss it with you so no need to worry.
I don't believe that a child can be diagnosed with a condition where symptoms may or may not present in the future. Hypothetically speaking, I might develop something in the future but I won't be diagnosed with it now "just in case" the symptoms shows up in the future. In that case a working diagnosis is given which may or may not lead to a confirmed diagnosis. So your son would have been diagnosed with asd because of PERSISTENT SYMPTOMS which cannot be cured, it gets better with therapy but it cannot be cured. Send an email to the secretary giving your child’s details and thanking them to assess your child, however, that you were not sure in what basis the diagnosiswas clnfirmed.

GOSH obviously do think DS meets the criteria otherwise they would not have diagnosed.

But then I keep thinking there is mild ASD when people don’t read faces, don’t read between the lines, don’t understand social cues etc. Basically they are socially blind. They say the wrong thing all the time.

It seems that when someone says something that fits your narrative, you accept it. When it doesn't, you call them wrong.

Can I ask, what was your son's formal diagnosis on paper from both the first and gosh assessment. You would have had a final report for both(I'm not talking about what you were told about asperegers, I mean the actual diagnosis)

Was it ASD type 1?

So you don't trust a school to report on the difficulties they see in your son to inform the EHCP and give him the support he needs in school but you do trust a former HT and SENCO to disagree with world renowned experts at GOSH and declare him not ASD. You are deluded, I'm sorry your child having a diagnosis is something so abhorent to you but it won't be the ASD that damages his chance of a fulfilling future it will be your actions in denying who he is and what support he needs that will do that.

Yeah, Dr C explained to me that they look for differences in how you communicate, how you do things etc. Mannerisms that we normally don’t pay attention to. My son while talking to his teachers does look in the eyes. When interacting with his friends he does look at their faces. But then I am not professional to understand how long that eye contact should last.

What was ghe paper diagnosis from assessment 1 and GOSH assessment?

It’s Language Disorder and ASD on the paper.

"OP's child wouldn't have been on the ASD pathway just because of a speech delay he had to be exhibiting other difficulties. The OP's son has had two ASD assessments, a second assessment from GOSH who are considered experts in ASD assessment. Diagnoses aren't given easily and based on one report from a SALT or school it is a multidisciplinary assessment. If GOSH has diagnosed ASD then child has ASD no matter how much the parent wishes otherwise or argues against it. She wouldn't have been a bystander in any oof it her views and experiences would have been sought and considered and still the child got a diagnosis not least because all the instances that she quotes of it not being typical of her very narrow understanding of ASD fit perfectly with a broader ASD profile."

Yes, I do understand this but it sounds like OP wasn't aware of many things, it sounds like they didn't take parents feedback into account from what she has mentioned although it would be very surprising if this is the case so I am giving her benefit of doubt trying to help her so she gets a full picture. Sometimes doctors takes into account what a parent has mentioned and then diagnose the child so it will be very very surprising if she was not kept in the loop about it.
It seems like a long process going through all this. If it was me I would have straight away asked questions as to why they think it is better to put a child on ASD pathway but sometimes we don't. Medical field is complex to understand for many people. I do feel that when the initial diagnosis of ASD was made, parent would have been informed of it, if there were any doubts, OP should have raised questions then and there. Unfortunately, it has been carried for too long now. I feel it's for her peace of mind that she should contact the health provider and ask them the details so that she can get closure on this and I am sure the health provider will be more than happy to help with her query.

Yes, GOSH said ‘We see something subtle’. So it’s mild. Type 1.

On the final report did they put Level 1 ASD and did the first assessment do the same?