can a diagnosis be removed ?: Hi please help I’m... - Mencap

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can a diagnosis be removed ?

Trains10 profile image
13 Replies

Hi please help I’m going round in circles and need some clarity .

My son was diagnosed in 2017 with autism, and mild general learning difficulties. I guess it’s general as opposed to specific. The Educational Psychologist and team diagnosed these and it was severe on first assessment but they settled on mild by the end of the 2 year assessments.

roll on now we are consulting with specialists as mainstream can’t meet need and he’s unable to attend. Struggled since nursery, he’s now year 4.

Local authority are saying he can’t have mild learning difficulties as they scour through his reports. His cognitive ability doesn’t match they say. They are looking at the same reports that the diagnosis is on.

surely they don’t have the authority to remove this diagnosis from him and his ehcp.

I feel suspiciously that they are trying to make him fit into a setting by altering his needs. We are looking for specialist, they said our preferred one said no can’t meet needs. Although everyone was expecting to get a place there. The one that said yes is new and council run they are pushing so hard for kids to go there.

Summary sorry it’s been long.

1) can LA decide to remove a diagnosis?

2) Mild General learning difficulties- people dont just outgrow this do they? Once it’s diagnosed it’s there. Like the autism.

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Trains10 profile image
Trains10
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13 Replies
Jofisher profile image
Jofisher

hi speak to Mencap helpline ask young p for a second opinion speak to the autistic society carers association. I don’t believe it’s the local councils job to change a diagnosis it’s your specialist doctor isn’t it. An educational psychologist maybe able to do stuff but unfortunately I don’t know enough about this side of things. Are you in a position to pay for a consultant social worker ? They could really help you

Eeviee profile image
Eeviee

hi there. I read your post and in places it is a bit garbled but I think the gist is that you think your son should go to a particular school and the LA suggest another and you think they are making sure your sons diagnosis fit with the LA choice. This is a situation many parents have faced and continue to face. In order to get your choice of provision you will need to get INDEPENDENT reports (paid for by you ) from an educational psychologist plus others such as speech therapist and occupational therapist. Only then can you determine your sons NEEDS. You can then use these reports to present to an educational establishment and they can also decide if they can meet you sons needs based on these reports. The LA always try to save money , so they will use their own internally generated reports to say what they want it to say , so you will need to provide your own reports if you want to challenge them. You may even have to get a specialist solicitor. (Avoid SEN LEGAL!!) Look on a website called SEN JUNGLE or call IPSEA. Good luck.

CoyoteU profile image
CoyoteU

I don't know so much about Removing a diagnosis but maybe you can put together a report or list that covers his needs and anything that helps him if there is anything?

Trains10 profile image
Trains10

thank you for your replies.

I think the problem is the local authority can’t have the powers to change or remove a medical diagnosis.

They also want to tell me when and if he’s allowed to use his wheelchair. It was assessed for and prescribed by nhs wheelchair services. I don’t think that’s up to them to decide either.

learner01 profile image
learner01

I agree that to get a true picture of your son’s needs you need independent reports.

Your son’s assessment seems to have taken an extraordinarily long time.

A clinical educational psychologist could assess his difficulties and needs in a few hours. There are recognised tests to do so. They can also say what help and support should be provided. Speech and language, and occupational assessments can also be done in a few hours.

Without these assessments you won’t know what your son is struggling with or how he can be helped.

He may well have specific learning difficulties but you won’t know without these assessments. He may be dyslexic and have other learning difficulties because they often go together. Two of my children were diagnosed with dyslexia and one had speech and language issues as well.

Eviee is quite right in what she has said.

LearningLot profile image
LearningLot

Educational placement is based on need not diagnosis, so it really doesn't matter what name they give to his learning difficulties. I think if he's in year 4 and still really struggling it's probably unlikely he will catch up, unless there's another reason for his delays, for example if he's missed a huge amout of education. Why do you feel that the new school that the LA has chosen is not the correct place for your son?

Trains10 profile image
Trains10

hi thanks for your reply.

He has many diagnosed conditions. The la run school is for semh needs. He doesn’t have that as a need. It’s a plain white calm quiet learning school. He strives in interactive learning, doing and using multi sensory approaches. Lots of colour, visual stimulation etc. I wonder how his needs would impact those who need that calm quiet low stimulation. Just makes you wonder how it would all work. He’s never engaged in school he’s not been able to. They leave him to his own thing and if he happens to write about something they use it as literacy to tick off curriculum if they can.

learner01 profile image
learner01

I’m sorry I can’t agree with learninglot. From my own experience it’s never too late to learn and it’s very important to have assessments to find out what a child’s difficulties and abilities are, otherwise you have no idea how to help and might actually do things that harm out of ignorance.

 It sounds as though your son is very keen to learn and has the ability to do so since he is writing things for himself. It may be that he is very intelligent but is not being taught in the right way for him because he’s not being given the multi-sensory and interactive teaching that he needs at the school he is at. It must be frustrating and upsetting for him. 

One of my children didn’t begin to learn to read and write properly until he was in year 4 to 5 and only as a result of lessons I paid for out of school with a teacher who taught in an ‘old fashioned’ way that suited him. An educational psychologist found he is very intelligent but had not learned from primary school because of specific learning difficulties.

He also had some speech and language difficulties too which were not obvious but realised as a result of an assessment. He had ‘word finding’ difficulties which meant he was sometimes slow with his speech because he needed time to think of the words.

I did have to get his assessments done privately but it was worth it. Assessments by the LA were vague, didn’t actually discover what his actual difficulties were and didn’t suggest any real help.

With the right teaching for him he made huge progress and caught up. It is never too late.

There are specialist schools that teach in the way that suIts your son and he should be offered the chance to attend one. 

An educational psychologist would be able to pin point what your son’s difficulties are and recommend what style of teaching would benefit your son. It would also help make his needs clear so that the LA would have to take steps to provide the actual right education for him and not just vaguely say he has general difficulties.

As Eviee suggested please do contact IPSEA for help and advice. 

Trains10 profile image
Trains10

thank you for sharing learner01 unfortunately the LA think all the academically potentially able/able kids need the quiet and calm to learn. So are pushing for that school. The fantastic school that could meet all his physical needs on site felt that they couldnt meet his needs as he could potentially be academically able. There is no school for the inbetweenies. He’s going to be pushed into the white school which he associated with a prison like his school he’s on roll now but not attending. He can’t even see out of the windows as they are tinted he didn’t know they were there. He has visual impairments although he has vision. Visua processing disorder. Depth perception is off, spatial awareness etc. light sensitivity.

I wonder if LA will change his diagnosis to specific learning difficulties instead.

learner01 profile image
learner01

Hi Trains10 . You really need someone to help and support you with this and who understands the system and the laws regarding your son’s needs being met. It’s nonsense that all academically able children need quiet to work. Some children with sensory processing issues need to be able move around in order to learn. That is something that an occupational therapist would be able to assess.

It’s unlikely that the LA will change their ‘diagnosis’ . You will have to get a professional independent assessment in order to challenge it.

IPSEA are a charity that helps with getting the right education. , Do look them up. They are experts in special education needs and disability and can advise you.

Charlie2750 profile image
Charlie2750Community friend

Hello I see you use the word difficulties and not disabilities. I find a lot of people use the terms interchangeably but they have a different meaning.

A learning difficulty will be dyslexia or dyscalculia which they will most probably have a normal IQ and can go to a normal school with special help.

A learning disability will cover communication skills, sociability and mixing with people ,use of hands and feet, and lots of other things. I will stick my neck out now and say that I have heard social workers use the wrong term. The other thing is some one with a learning disability (and this may hurt) has cognitive powers less than normal or they have a lower

IQ so they may find life is hard. I have a son now 35 who has severe learning disabilities but he is great. I also had a sister who was 4 years younger than me and she had Rhesus disease from birth. My mum was rhesus negative and this caused brain damage but not severe. She was labeled Backward and went off to a special school but this was in the 1950. She married and had a son my nephew who has some problems however he works in a supermarket. Please look at the other answers because they give wise advice. Be assertive .The local authority cannot change his diagnosis but what sort of school are you looking at ?Is it a special school? Good luck

Charlie2750 profile image
Charlie2750Community friend

I am sorry but I did not read all your replies and I may have got the wrong end of the stick.It does sound as if your son does have a learning difficulty. Sorry about my error.

Trains10 profile image
Trains10

thank you everyone for your replies. I do need more help here. I’ve had my sons revised draft EHCP and the LA have removed the general learning difficulties throughout. So they can remove as they see fit. They are making him sound more able in the plan than he functions. I’m sure it will come out when he actually goes to a placement again. He’s awaiting specialist placement but they say as he’s able then he has to go to the school for SEMH which is taking all the autistic children. Even when he isn’t SEMH. They have added it as a need so he fits the school profile. It’s a quiet calm white box of a school for children who need that kind of environment. Which of course he doesn’t. He’s all mr tumble interactive colourful and fun learn through play type.

Such a battle.

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