Why? Just why?

[mumof6needssanity]

Hi all,

I dont understand cahms have assessed my ds for asd again and are still just saying he is a complex case. ( ds has 2 dx of sensory processing disorder and speech disorder ). Cahms are saying ds has social communication difficulties and behavioural issues but they will not dx asd as when they phoned his class teacher she said he was fine. Aaarrrrggghhhhh.

Cahms, paed, hv, anxiety, ot, salt all have said they think ds has ADHD but again on the phone class teacher told cahms he is fine so they wont even assess him for it.

How do I get a dx so I can access support for ds at school and at home?
Ds masks at school and does not meltdown there. But the teachers and ta's have regularly seen me struggling with my ds meltdowns after school. Ds show anxiety at school by chewing clothes, fingers, deep,throat hum noises, is on the outside at playtimes looking in. But of course school says hes fine.

Please help advise me oh wise ones I'm at a loss were to turn now. I just want to give up and cry tbh.

I hope this makes sense my thoughts are all scrambled.

Thanks for reading

[Ineedmorepumpkins]

Maybe you could remind the proffs how little training teachers get in SN! They are quick to tell us when we dare to critisise (sp) them!!

There are posts nearly every day on here about teachers not seeing ASD in children.

I had a similar problem and it took 3.5 yrs to get Dd3 the dx that she desperately needed.

Strong letter time

[Icimoi]

How old is your ds? Does he have a statement? If not it could be worth making a formal request for an EHC Needs assessment. It may not get you any further towards a diagnosis but the reports you have may focus people's minds a bit more.

Do you know whether you might qualify for legal aid? Sometimes it's possible to get private assessments that way if you reach the point when you are doing a tribunal appeal.

[mumof6needssanity]

Hi,
Thank you for all your replies. To answer some questions my ds is 6. We have been on the journey to reach a dx for 3 years now.

I dont know who the lead prof is. How do I find this out?

He does not have an ehcp. School have said they will not support me in getting one. Also on paper school look good they have written a very good smart Iep which shows support for his speech disorder and social communication but they don't actually do any of it.

This is a nightmare, I feel like im stuck on a never ending merry go round.

[Icimoi]

I think it could be worth making a formal request for an EHC Needs assessment. There's a precedent on the IPSEA website that you can follow. Also you could phone IPSEA or SOS SEN (link in the MN sidebar on this page) for more advice.

[AgnesDiPesto]

Ask the GP to refer you for a second opinion at asd centre that specialises in complex cases eg Lorna Wing, Elizabeth Newsom centre etc. I think 3 years is proof you have exhausted local expertise.

[StarlightMcKenzie]

'have written a very good smart Iep which shows support for his speech disorder and social communication but they don't actually do any of it.'

Then he won't make any progress and you'll have evidence of need of an EHCP.

CAHMS do like the family circumstances explanation for difficulties, and no doubt the school seeing you deal with a child in meltdown when 5 mins earlier in their care, the child appeared okay.

'complex' in this case probably means that they are not willing to rule out that his difficulties are home-grown.

[StarlightMcKenzie]

Oh and it is very rare for any school to support a parental request for an EHCP, so don't let that put you off.

[mumof6needssanity]

Thank you again.

This was a second opinion cahms did second opinion, paed did first.

Unfortunately I cant afford to go private but will defiantly ask gp to refer to an asd centre.

Time to get my battling gear on again isn't it? Oh well here we go again.

[MeirAiaNeoAlibi]

Mumof6, bring your other 5 dc to the GP. ideally bathed, polished, and behaving impeccably just for that brief 9 min period of their lives

Get him to write to the paed/camhs asking which aspects of your parenting should be improved or changed, given you somehow raised the rest of the dc without giving them 'complex' behavioural and social-communication issues.

If said GP knows your DS well from many years of coughs, sprained ankles, sore throats, so much the better- if he is able to comment on his own behavioural observations, that should trump a newly qualified teacher with sod-all SEN experience, who's only had him in the class (of 30) since Sept.

[mumof6needssanity]

Hi Meir,
Unfortunately we are at a satellite doctors surgery so never see the same doc twice. My hv knows us well though do you think they would listen to a letter from her?
Tia

[MeirAiaNeoAlibi]

Experienced HV who knows you well- perfect.