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Misdiagnosed?

(11 Posts)
Pineapple5678 Sat 21-Nov-15 20:25:30

My son 8 years was diagnosed with Asd and add last month.
I have been lucky in that the process has been quick process. I saw gp in July refferal to paediatrician for October we filled in questionnaires along with the school and then at our first appointment after 5 minutes talking to son and 45 minutes to me she diagnosed.

I've been feeling lost and with no reports etc to go by I haven't known how best to help him the school were saying that he was choosing not to listen which I queried considering the diagnosis and paid for a private SALT to assess him in school. I'm awaiting full report but she has said he has spiky language and disordered speech impairment and with regards to processing language scored very low 0.4. She stated that she saw no sign of ADD but did asd.

I recieved report from paediatrician today and am so confused.
She states ADD as main diagnosis with many traits of ASD enough that she would diagnose. She also said anxiety and possible dyspraxia. All after a 5 minute chat?!
She goes on to list why she came to this conclusion but she basically repeats what I said whilst there.

Do I ask for a second opinion?
I know my son has quirks and have long suspected asd but I can't help think the concentration issues are coming from this rather than a primary diagnosis of ASD.
If he had had the Ados test for example I would have an idea of where his problems truly are and could begin to help him. I didn't know he had problems processing language to the degree he does the paediatrician even said language fine yet SALT says severe issues. I don't know what to do?

Ineedmorepatience Sat 21-Nov-15 21:55:29

Wow! What a muddle! firstly I was under the impression that a diagnosis of Asd should be made after a multi disciplinary assessment!

That means he should have been seen by at the very least a SALT and an OT as well as a paed and sometimes a clinical psych too!

Also I think your son should have had at least one type of assessment eg ADOS, 3DI, DISCO or something else I dont know the others.

Maybe you could ring the paed and tell her what the SALT said and ask for an ADOS! Or as you say ask for a second opinion!

Good luck flowers

frazzledbutcalm Sat 21-Nov-15 21:58:19

I'd ask for a second opinion - purely because you'll be forever wondering and unsure.

My dd was dx in January, similar to your ds with very little looking at .. no SALT, Paed, EP, OT ... nothing. We're now in a position of not knowing how to help her at school as we don't know fully where her struggles lie. We're now going back to basics and getting professionals to look at her and report back. I feel like it's all back to front and has definitely hindered us.

OneInEight Sun 22-Nov-15 07:59:05

Sounds like the quality of our assessment - we did see lots of people but basically had the same two hour chat with them all. The Community Paediatrician and CAMHS in particular totally failed to give advice. Caring carrots aplenty but meaningful help a big fat zero.

The two sets of reports we have found the most helpful in identifying specific difficulties and solutions are SALT and an EP.

Having said that the report produced by ds1's school SALT was infinitely better than the generic garbage produced by the NHS salt who saw him for 1 hour when he was very stressed and pretty uncooperative. I do think SALT's need to spend time with the child when they are relaxed to identify fully their communication difficulties.

The LA EP produced a better report - she talked to us, school and did various tests with ds1 - and suggested some useful strategies for school to use with ds1. I would definitely recommend pushing for that. If school refuse there are private ones you can access but they do cost £££ and there is a danger school and the LA will ignore. Having said that if you know the cause of the difficulties it helps you ask much more effectively for appropriate help.

We have never seen an OT but this might be useful. There may be sensory issues in the classroom that contribute massively to the concentration issues. ds1 can have brilliant concentration when he is in a quiet room but the minute someone else walks in he can be totally distracted.

You might also consider applying for an EHCP plan because that will involve a proper assessment of his difficulties at school. Whether they will agree or not will depend on how far he is behind and/or if there are behavioural difficulties.

Youarentkiddingme Sun 22-Nov-15 08:51:49

I agree with contacting pead and saying in light of conflicting reports and there fore no cohesive profile of your DS to help support him you'd like an ADOS assessment or similar. Also ask for referral to NHS salt (I would tell this salt about private assessment - just see what they say) and NHS OT.

zzzzz Sun 22-Nov-15 14:28:11

Wow! Which part of the country are you in??? Here the process is slow and laborious. What a roller coaster.

2boysnamedR Sun 22-Nov-15 15:56:14

My youngest Ds had a diagnosis without any formal tests. Just salt pead portage and us in a multidisciplinary meeting ( but he was 3).

Did you have many appointments leading up to this?

I thought ( I could've wrong here) that asd is normally a lead diagnosis, in that if you have asd, ADHD and dyspraxia then the asd is normally the biggest consideration.

I think you would have every right to ask to go back and ask questions.

Pineapple5678 Mon 23-Nov-15 17:46:26

Thank you all very much for your advise. I spoke to the SENCo today. She said she wouldnt get the EP involved as there are not enough hours left in the budget and there are children in more need than mine. She did say that my child isn't the first in the world to be diagnosed and all teachers know how to deal with ASD?!? I pointed out that on Friday his class teacher once again said he regularly chooses not to listen even after being told his language processing is at 0.4% of the norm so clearly doesn't understand him and never mind it a huge spectrum!
She also said it was pointless referring to occupational therapy even though the diagnosis letter said for school too.

I'm going to go back to paed and ask for second opinion so with the tests u can find out where his problems truly are

Ineedmorepatience Mon 23-Nov-15 18:15:23

Wow! Senco sounds delightful! How bloody disrespectful to you and your child!!

Sorry you are having to deal with this shite! flowers

Tambaboy Mon 23-Nov-15 19:30:00

Our case was similar and I've told ds' s story a few times before. The main difference was that DS was referred by NHS SALT after about 2 years of being in the system. He was supposed to be referred much earlier but it didn't happen and me being so ignorant of the system I didn't chase it up thinking it was all good.
Anyway, paediatrician mentioned ASD and Dyspraxia after a chat with us and a brief observation of DS at the first appointment. Us parents and school had to fill in some questionnaires. Paed diagnosed ASD 5 minutes into the 2nd appointment! I was so shocked I got into a bit of an argument with her, I demanded proof blush so she reluctantly agreed to carry the ADOS with her colleague a few weeks later.
He scored well above the threshold for a diagnosis. It was still a shock but then I had no option but to accept it.
I understand what you are going through.
I think you need to ask for a second opinion or a more in depth assessment.

By the way the SENCo and CT sound like a waste of space.

Pineapple5678 Mon 23-Nov-15 19:40:52

I just feel like I'm constantly banging my head against a brick wall, I paid for private SALT after school said no issue with language and refused to refer to literacy and language support. In the senco words his behaviour has improved I barely know he is there now, which broke my heart just because he is sitting quietly doesn't mean he is learning. He is just saving the meltdowns til he gets home.
To be fair to class teacher she is willing to learn about ASD etc but is constantly ruled by Senco unfortunately his year has a high number of people with SEN and it means my son is getting forgotten.

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