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.

During assessments they filmed him. I think they analyse body language (gestures, facial expressions etc)

@Samee20 It really isn't like that you are fully and actively involved throughout. OP's narrative is that if her dc is the next Elon Musk then it's acceptable to have ASD preferably undiagnosed hidden under a successful exterior but if ASD could be visible might need support then she needs to get rid of the support and as a result question the dx as support is no longer needed.
She is doing her child no favours, she's wasting precious resources when many children are waiting years for assessment and her son has had two and now she wants a third purely because the child doesn't meet her precise expectations.
OP should be looking for counselling for herself to explore her reactions to the diagnosis and support to come to terms with it not pursuing yet another assessment on a child already twice diagnosed.

@hiredandsqueak I have been tried to read 90% of what she has mentioned and it is very obvious to me that she doesn't have a clarity over the diagnosis or on what basis it was confirmed, hence, I told her to ask from the experts themselves. This is the most logical suggestion I can give. I don't believe in beating around the bush and not coming to a conclusion. As a parent she has right to ask them if she has any doubts about it, I believe she might be concerned about contacting them and raising objections(?) But either you do it or not. There is no use of keeping doubts in our mind, it's just gonna stress her out. Once she gets the answers or clarity on the diagnosis she deserves, it will be easier for her. Elon Musk or not (i am not even sure if he has been formally diagnosed), i do understand why people are getting offended with the comparison. I don't see what's the obsession over academics performance anyways, yes i am sure it feels good for people with high profile jobs to say that, i am a doctor, i am a scientist but that doesn't mean they are more happy than people who are in unprofessional jobs. My 2 siblings are in high profile reputed jobs but they still don't have the life they want and they have no diagnosis. My sister finally left her job and has been travelling on and off because that makes her happy instead of working in a job where demands were too high. I left a very good job of mine after marriage because it's not always about academics.

@Samee20 yes definitely happiness is what counts. I do think though OP would benefit from some counselling so she can explore why she can't come to terms with the diagnosis she has been given. If she explored her own feelings it might help her see a path forward, maybe she will accept or maybe she does once again need to put her child through another assessment. Without exploring her own feelings though there is nothing to say that she will accept a third assessment and diagnsis either and you have to ask where will it all end because fighting against services and professionals eats in to time she could be supporting her child to give him the very best chance of a positive outcome.

You can have autism and make eye contact.

Have a look at how GOSH explained it to us. Remember Dr C said to me ‘This is not a disability!’

Thank you! I have just noticed and read your reply.

I think that GOSH are acknowledging that you don't agree with their findings and acknowledging your stereotypical views of what a person with ASD might be like but diagnosing him regardless because he met the criteria for a diagnosis. As for whether it's a disability or not well in my experience it's a disability that is more or less disabling dependent on the support and the environment. You wouldn't say that a person who uses a wheelchair doesn't have a disability when the wheelchair fills their mobility requirement and I wouldn't say that ASD is no longer a disability when in the optimum environment with gold standard support either.

They were saying that your DS does meet the criteria for ASD diagnosis, but they note that you don't see problems in sensory or routines. They are trying to reassure you that your DS could still be very high achieving.

What is disabling for DD2 is not her ASD, but that she lives in a NT world, where her ASD is in the minority. If all the world had ASD, she'd be rocking it. But they don't, so she's at a constant mismatch with people who don't understand her and she doesn't understand. Her anxiety limits her world. Her anxiety is because of the demands of living as a person with ASD in a NT world.

It's only not a disability if your ASD traits are valued and you can function despite them. Some children find their niche. Others find it incredibly difficult to cope. You don't get a crystal ball to see which your child will be. My children is a completely different people to the people they were when they were very young. Life is infinitely harder and it's quite distressing to watch.

Yes @Lougle same for mine too. The worries I had when they were in Primary turned out to be inconsequential once they hit their teens and beyond. It is really heartbreaking. I'm at SENDIST again on Friday to secure the provision dd needs going forward now she has left independent specialist school that's why I'm incredulous that OP would throw away an EHCP because she didn't agree with how school supported her child.

So GOSH didn’t use the term Asperger Syndrome.

Neither did they say DS didn’t 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”. Quite the opposite in fact.

Nor did they say DS didn’t have sensory differences or difficulties with changes in routine, only that you feel DS doesn’t.

Dr C used term Asberger over the phone. Asking me, have I ever heard about it? I already confirmed it earlier - my son doesn’t care about routine, has no sensory issues.

The paragraph from GOSH acknowledges you don't see the sensory issues or the need for routines it doesn't mean they agree or that your son didn't display enough behaviours during the assessment to get a diagnosis though. Your observations might be very different to what a skilled professional sees.

But GOSH aren’t saying he doesn’t have sensory differences or difficulties changing routine, only that you don’t feel he does, which isn’t the same thing. DS may not have, not all with autism do, but GOSH are not saying DS doesn’t.

I think GOSH have said what they have said, including mentioning Asperger Syndrome, not because they think DS has Asperger Syndrome but because of your views about autism and the diagnosis.

Your observations might be very different to what a skilled professional sees.

^^This. I was amazed at what those undertaking the ADOS for me, DD2 and DS3 noticed.

@FloatingBean I was gobsmacked to receive ds's first ed psych report, he wasn't even three, he'd got chicken pox, he wasn't in any way co operative but he saw so much. He was absolutely first class and an LA Ed Psych to boot. All subsequent ed psych assessments have only been that quality when I have paid for them.

Yes, I agree it may be subtle. For example, my husband doesn’t like wearing watches. He says he just ends up fidgeting with it. Could be a symptom, right?

I learnt so much about DS from reading his ados and Ed pshyc reports. I think at that point that was the most useful thing as it gave me information to move forward with

Well for my dd she has numerous sensory difficulties but she wore a full school uniform including shirt tie and blazer but at home she lives in soft leggings and loose soft tops. Yes she can conform when she feels she has to but it comes at a cost and it exhausts her. Nobody who saw her in full school uniform would have any idea that it was a sensory nightmare though. Your son would have seen an OT as part of the assessment who would have reported on sensory needs and difficulties.

My son was seen by OT and she saw no concerns whatsoever (he was maybe ~4 or 5 yo). I remember she gave him to touch different fabrics, told him to kick a ball, asked him to draw whatever she was drawing. Things like that.

The ADOS is amazing. I had to sit in the room for DD2's because she wouldn't go in without me. It seemed to go well at first, and I was starting to doubt myself. Then as things got more abstract, it became more obvious. They pick up on everything. DD2 used the word "ambushed" 3 times during the story telling part, which they noted because it was an atypical word for a child of her age, and the story she was looking at.

Neither of mine have had an ADOS they were diagnosed through a multidisciplinary assessment. ds had diagnosis at 2.5 and dd week of second birthday. It was quite longwinded though and involved attending nursery at CDC for six weeks besides all the individual assessments.

I remember the SALT saying "My dog was really naughty at the weekend." DD2 said "mmm". She said "He was soooo naughty..." DD2: "mmm". "I couldn't believe what he did!!" <Tumbleweed>. DD2 just isn't interested unless it involves her. Even if it is about her beloved dogs.

@Lougle lots of comments about dd were she had the manners and expressions of a lady and would always congratulate whoever was assessing her if she felt they had done something well. She'd say "excuse me, would you mind if I took a little look at that when you have finished?" and "oh well done Karen, super job" all delivered in a BBC newsreader accent and she wouldn't have been two.