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Refusal To Assess


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#1 Ymum

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Posted 16 June 2014 - 06:30 PM

I have a son with a diagnosis of GDD ASD and low muscle tone he's just about to turn 4 non verbal and quite lovely really.

 

I then have 2 older girls one 9 and one 7 the 7 year old was referred to the peadiatrician for  ASD ADD and possible Dyspraxia back in October we saw them in January and they said they had to refer her to speech and language so they could do an assessment before they could refer her to the joint social communication clinic where she could get her diagnosis.

 

We were told the wait would be around a year for speech and language which while not ideal is not unusual either. Now we've been told that there is only funding for speech and language for definite speech and language need and not for assessment for autism. Which means we'd have to pay for a private assessment if we want a diagnosis.

 

I can't believe they can do this, clearly there has to be some speech and language need in a child with suspected autism and I know there are areas of understanding and in speech that my daughter struggles with but they refuse to assess so what can I do. 

 

Can they do this and turn an autism diagnosis into something you essentially have to pay for or live without.


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#2 mad cat lady

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Posted 16 June 2014 - 08:02 PM

This seems really bizarre. My son was dx without any input from speech and language by CAMHS ( we did have a SALT report privately when we were preparing for a tribunal but this was years after dx)

I would challenge but think it would be a good idea to contact IPSEA as they have many specimen letters which would be useful and should be able to quote some references and quotes for you to use.

#3 cathcart

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Posted 17 June 2014 - 08:05 AM

What about asking the GP to refer to SALT? A referral should be taken up within 18 weeks and seen. If this service is not available complain to PALS or get GP to go to Commissioning Service.



#4 imperfect parent

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Posted 17 June 2014 - 01:58 PM

Like the others I think this sounds wrong.  Is it in writing?



#5 Ymum

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Posted 17 June 2014 - 06:20 PM

My friend has hers in writing and when she contacted a local charity that is supposed to support families of children with disabilities they just told her that an assessment would be £250 and who to contact if she wanted to pay for it.

 

The GP can only refer to the SALT team my son is under and they will only see children with speech and communication issues so essentially the non verbal or limited speech children.  The SALT team that were meant to assess my daughter were only accessed by a referral from a paediatrician which we have but they have cut the funding and are now saying they won't assess.

 

It really does feel like we are taking a massive step back in this area that only children with speech and language problems can get a diagnosis of ASD and from personal experience the diagnosis wasn't even that useful as we were able to access all services before diagnosis as his symptoms on their own were enough.  My daughter on the other hand is really struggling at school and with social stuff in general and a diagnosis would be really helpful for her to be able to access some support although my rose tinted spectacles of diagnosis equals open doors are fading fast.  



#6 imperfect parent

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Posted 18 June 2014 - 09:36 PM

That's not right.  Both my sons had no speech issue at 4, and the eldest had his first ASD assessment at 5.  Your GP should be able to refer to a paediatrician who will in turn refer on to a diagnostic team.

 

Try your local ASD support group and see how others got their DX.  

 

Don't be put off.



#7 Windy willows

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Posted 24 October 2014 - 06:46 PM

Apparently according to my GP they can't refer to paediatricians for ASD.

 

My local support groups don't want to know, they have basically told us they can't help.

 

We're left with no help and nowhere to turn.



#8 imperfect parent

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Posted 24 October 2014 - 07:32 PM

Apparently according to my GP they can't refer to paediatricians for ASD.

 

My local support groups don't want to know, they have basically told us they can't help.

 

We're left with no help and nowhere to turn.

Try  asking the National autistic society, and see if you local support group will put you in touch with another parent who you could ask about how they got a diagnosis in your area.



#9 Spiral

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Posted 20 November 2014 - 10:31 PM

In our area we are being signposted back to school for all referrals we want for kids. Could you have a chat with your dd's SENCO and see if they would refer.

#10 lennie len

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Posted 02 December 2014 - 07:35 PM

" they said they had to refer her to speech and language so they could do an assessment before they could refer her to the joint social communication clinic where she could get her diagnosis." 

 

How odd this is, or maybe times have really changed.

In my experience if you want to get someone moving, you have to put in a complaint....and what they have told you seems very odd.

Who do you complain to? They may be known as "Patient Liaison" now but may still be known as PALS. You phone your hospital, request the email address to send complaint to at PALS, when you get this, bullet point problems:

 

State your child's needs (suspected and diagnosed), state why they need to be seen.

 

State you have been told the following-

-Child needs to be referred to SaLT BEFORE they can be referred to social comms clinic for diagnosis (or assessment?)

 

-The wait to be seen by Speech and Language is about a year.

 

-Been told there is only funding for speech and language for definite speech and language need, NOT for assessment for autism.

 

-The SaLT team will only see children with speech and communication issues.

 

Ask if this is correct, if it is so, where do you go from here.

 

State that all children with ASD have impairment / delay with the social use of language,  and so your child needs to be assessed to see where strengths and weakness lie. It is obvious when a child has a speech problem (like pronunciation, sound errors), but it is not obvious if they have difficulties with receptive and/or expressive language without assessment.

 

Finally, state what you would like to be done to remedy the issues.

Click send.

 

Good luck :)






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