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Who's door should I knock on next?

(10 Posts)
Courts010 Fri 02-Nov-12 12:06:12

My DS (9) and Year 5 had assessment recently. It was for possible ASD. They said he doesn't really have social communication difficulties so are closing his file.

We are already querying Adhd (as are camhs), ODD and he has sensory issues too.

Would appreciate any advice who I can ask to see him next, based on the Social Communication team's report.

- Education attainment: Reading 2b - Writing 2c - Maths 3c. DS has made little progress in Year 4. This is being addressed through on-going assessment.

- DS likes to talk on topics that interest him, but followed cues to discuss other topics.

- Sometimes interrupts when others are talking - but follows teachers cues like sshhh, raised hand to mean wait, bell, whistle, etc.

- Can make irrelevant comments on his train of thought at times

- shows emotional responses to verbal/non-verbal overtures

- Did not seem to have difficulty understanding most of the language used, but, did appear literal in responses.

- Does have some difficulty with reading, which is likely to be related to comprehension of text

- Appears not to be listening at times - can be quite fidgety and distracted by something on his table.

- Has some difficulty understanding abstract concepts or non-literal language

- During observation I dodn't observe any repetative ritals, specific attachments to objects, compulsive adherance to non-functional routines or rituals, unusual motor mannerisims.

- at home he will get upset by changes in routine ie mum having shower in a different order to usual

- School report that, left and without clear direction can have difficulty with: Organisation - settling to work - knowing how to begin/end a task - generalising skills from one context to another - tolerating making mistakes - emotional control. He also has low self esteem and can get anxious or easily stressed.

- Sniffing things and making noise in class

- he did not appear clumsy but fell over when running

Handywoman Fri 02-Nov-12 13:48:24

Is this word for word what the report says? Or does it say more? Do they say the need to observe problems with changes to routine in order for them to be considered problematic? And there are clear sensory issues. And the issues with reading comprehension and difficulties with abstract concepts/ non literal language? Did they explain these findings to you in detail? Did they say they recognize all the issues but he is not impaired enough to meet the ASD threshold? How do you feel this report reflects your son? Sorry, more questions than answers.....

Handywoman x

KeepOnKeepingOn1 Fri 02-Nov-12 14:14:58

Who was on the team? What do they mean 'doesn't really'? Your DS sounds very similar to mine in a lot of ways - one comm paed doesn't think he has social communication issues but another other in the next county (thankfully the one he saw for SA) does. I have paid privately for a diagnostic assessment with Daphne Keen who is a consultant developmental paediatrican and for full assessment with Margo Sharp who is a SALT authorised to use DISCO and ADOS. DK diagnosed a complex neurodevelopment disorder with seven elements including ASD, SpLD, Auditory Processing Disorder, Sensory Processing Disorder, Anxiety Disorder and attentional deficits of an unknown nature. MS confirmed the ASD diagnosis. Otherwise ask for a second opinion/tertiary referral. I think Lorna Wing Centre also deals with complex diagnoses. You need someone to take an over-view - the behaviour that you describe cannot be explained by adhd even if he had that diagnosis. What's ODD?

One comm paed still dosen't accept (but is unable to challenge) the diagnosis which she believes is a 'shame'. Really? I think she is mistaking me for someone that gives a fuck. I can't believe her arrogance when her actions have cost thousands, taken precious time and have culminated with DS being unable to attend school angry My advice would be to get some big guns on board that cannot be fobbed off.

Courts010 Fri 02-Nov-12 16:21:48

Hi, Thank you for the replies. I'll try to answer best as I can. It was a specialist asd teacher who assessed him.

Apologies, there was a "social Interaction" section too. blush It says:

- Used appropriate, well intergrated eye contact (*I am shocked at this as we and the school didn't think he does*)

- Used full range of facial expressions meshed with his conversations

- turned towards others when speaking, either his head, body or chair

- used a range of gestures ie; shrugs, arms out to remonstrate, pointing, nodding, shaking etc

- appeared to have appropriate reciprocal peer relationships - he approached others and they approached him to play

- showed empathy towards others - made a year 3 girl laugh who was stood alone (played a juggling clown), chased a younger boy in a game - a gentle tap on his shoulder, picked up playground equipment

- demonstrated clear shared enjoyment with his peers but reluctant to play with assesor

- engages in social uses of language

- lots of to and fro conversation

There were no suggestions of any other assessment (as far as they were concerned). They purely noted and recorded what they observed at the time.

I do think there is definitely 'something' but wondering if there could be anything really similar to ASD, that we're missing.

Unfortunately, there is no money to get private assessments done and i'm frustrated by it all. School are looking like they're being helpful but not really sure they are being. He is getting into alot of trouble at school for disrupting others, being led easily (ie: DS, you do this and we'll follow). He wants everyone to think he's the class clown, but knows he's fidgety, impulsive, can't stay on task for long, struggling to sit still. His iep was done with just his teacher and I got given a copy. It basically says he's not supposed to get more than a set number of warning cards and not to be so disruptive in class.

KeepOnKeepingOn1 Fri 02-Nov-12 17:05:27

Sorry, where are you?

Specialist ASD teachers are not authorised to diagnose.

Why was he there? Is there a back-thread I am missing? confused

Courts010 Fri 02-Nov-12 18:24:49

We are close to St Helens Keepon It's a lady from LASC.

Sorry, i'm not too good at explaining things either blush

I queried ADHD years ago, but community Paed didn't take it any further as he sat still for a whole 5 minutes he was in the room.

We've been having issues with him at home, surrounding all the above difficulties etc for years and then once it affected school, people started to listen.

So we filled lots of forms in: to BIT, Camhs & LASC (and possibly someone else).

SilkStalkings Fri 02-Nov-12 19:37:04

Have you looked at PAthological Demand Avoidance if he has ODD type behaviours?

Courts010 Fri 02-Nov-12 23:24:37

Hi silk. No not looked at that actually. I know the odd were familiar. I'll have a look tomorrow.

madwomanintheattic Sat 03-Nov-12 02:32:22

Ds1 is dx ADHD with some asd traits, anxieties and phobias. He wasn't dx until 10 when we paid for a full psycho Ed evaluation from clinical child psych.

Until then he was 'ds'. Everyone agreed there was something (we had asd, ADHD, odd, PDA bandied about). Because he is bright no one was interested in supporting him, as he could (at a push if he was in the right mood) occasionally show flashes of brilliance at school, so no ld's to drag the results down. (They used to get the ht to stand behind him during sats to keep him on target)

Shellywelly1973 Sat 03-Nov-12 02:42:24

My ds has dx of ASD& ADHD from GOSH. I asked the Paed who didn't diagnose him at our local CDC refer him. Ds has I.Q of 126 just to complicate matters so at times seems very 'able'.

I would also have Camhs on speed dial... those who shout loudest & all that! ( i averaged caling them 17 times per week)

My mission was to make them all so sick of me, that they would see us just to get rid of me!! It worked.

Good luck, stay strong. Remember they are all just systems we are all forced to use, for the good of out dc...

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