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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

How would you handle this? I don't know what to do but am so angry

44 replies

ihatecbeebies · 06/12/2011 14:37

My (almost 5yrs old) DS has asd, we've been told we wont get an official dx until DS is 11, but have been told unofficially by the health professionals involves that he has asd and it is pretty obvious that he has asd too. His uncle also has autism.

DS is very bright and asked if he had autism like his uncle as he was different like him so I didn't lie to him, was honest and explained everything and got some books which explained autism at a Childs level and DS seemed to understand this and was ok with it after asking a lot of questions.

DS hates the Hoover or similar loud noises so I bought special noise cancelling headphones which DS was very happy about. He visited his dads/grandparents at the weekend as we're separated, and DS asked his gran if he could have a pair of headphones for when he was with them too as he didn't like their hairdryer etc, his dad and gran then told him I was wrong and he didn't have autism.

They mentioned nothing about this to me but when DS came home he was very upset and confused and asked me again if he had autism.

I don't know how to handle this tbh, they undermine me all the time but never anything like this.

OP posts:

AmberLeaf · 06/12/2011 14:40

Aside from his GPs being unsupportive and undermining...why wont he get a DX until he is 11?

That does sound right?

My DS got his DX aged 8.

lisad123 · 06/12/2011 14:49

What reason are they saying it will take till he is 11!!?

Original poster

ihatecbeebies · 06/12/2011 14:50

Because the local authority that deals with dx for autism for my area are in charge of a huge area and due to huge waiting lists and lack of funds they only dx in nursery and primary 7, but DS wasn't dx in nursery due to us moving house and changing nurseries. But apparently he'll still receive the same amount of support in school dx or no dx so that's why there's no rush.

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Original poster

ihatecbeebies · 06/12/2011 14:52

He's still got the same support, EP, salt, support worker, and is on school action too and has support from the senco, the dx would just be a label for DS and closure for me IYSWIM.

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lisad123 · 06/12/2011 14:53

That is a crock and you need to tell them that. My girls were dx at 5 and 3 years.
They need to provide a service that meets need and not funds.
As for he will get support without dx, we can all say that isn't true.
Go back, make it clear you aren't going anywhere.
Where are u in uk?

Original poster

ihatecbeebies · 06/12/2011 14:59

The west of Scotland.

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bee169 · 06/12/2011 15:05

I agree with Amber, not sure why the professionals are not giving a dx and are telling you to wait for 6 years!! esp as you have a family member with autism.

As for your in laws and your ex, its such a tricky one. I would speak with them separately and get them to understand that if you are all saying different things, your ds is the one to suffer. Even if they don't agree with your view they don't need to confuse the poor lad with an opposite opinion and undermine you.

Does his dad's side recognise his difficulties?

Original poster

ihatecbeebies · 06/12/2011 15:43

Well the uncle is on their side, he is ex's brother and lives with the grandparents, he is very low functioning though and wont ever be able to live on his own where DS is high functioning so they probably look at the two and see a difference. When I spoke to the grandparents to explain (I had to get an interim interdict against ex which is why I didn't speak directly to him) DS's issues, they agreed that he was 'a bit immature' but did not believe that he had autism. I'm now very concerned about how this will affect DS if every fortnight when he visits he is constantly being told that I am wrong and he doesn't have autism, but without a dx I don't think they will believe me.

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zzzzz · 06/12/2011 15:49

This reply has been deleted

Message withdrawn at poster's request.

Original poster

ihatecbeebies · 06/12/2011 15:55

I was told by the GP, then when I asked for a 2nd opinion was told the same in letter. I was also told by SENCO, the head teacher, the educational psychologist the speech and language therapist, and the health visitor, all seperately, I didn't believe it at first which is why I asked so many people.

If it was just the grandparents I could maybe be able to handle it but it is DS's dad too who is telling him this which makes him more upset as he doesn't understand why his dad would tell him different from what I am saying.

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AmberLeaf · 06/12/2011 15:55

Who are the health professionals that you have seen and that have said he wouldnt get a DX untill 11? ie was it health visitor/GP etc, what is their role exactly?

I think that whoever has told you that is trying to fob you off tbh.

AmberLeaf · 06/12/2011 15:55

oops cross post.

AmberLeaf · 06/12/2011 15:57

Im shocked that the SENCO, SALT and EP told you that, but I still think they are trying to fob you off.

zzzzz · 06/12/2011 15:59

This reply has been deleted

Message withdrawn at poster's request.

lisad123 · 06/12/2011 16:12

I would ring developmental pead and ask them what their guidelines are on dx.
I would also go back to GP and demand referral to developmental pead and tell him that it's not his right to refuse.

mariamagdalena · 10/12/2011 01:34

It does sounds like a fob-off. Cos diagnoses are made by specialist doctors (paediatrician or child psychiatrist), or occasionally by clinical psychologists, and all the other people you've mentioned are just providing 'input' to the decision, not 'making' it. And you can insist on referral to paeds or psych dr.

That said, in some areas the NHS is woeful and palms off its responsibilities onto other agencies. The trick is to find out 'who' diagnoses round your way, and then figure out how to get your dc in front of that person or team. Eg, if it's the child psychiatrist, then see CAMHS for advice on how to handle the 'emotional disturbance' caused by the difference of views within the family pending a diagnosis.

Regardless of the 'rule' re nursery v. year 6; there must be a mechanism for queue jumping certain cases. Eg, a child from overseas who needs severe autism confirmed officially so they can go to specialist residential school.

mariamagdalena · 10/12/2011 01:40

Could you put him back in nursery? Better for social/ communication teaching anyway, and might make it easier to get the assessment?

"If parents of children with birthdays in January or February choose to defer their child's entry to primary school, local authorities are under a duty to provide an additional year of free pre-school education for these children. Children with September to December birthdays can have an extra year only at the discretion of their authorities".

ArthurPewty · 10/12/2011 08:40

This reply has been deleted

Message withdrawn at poster's request.

FanjoForTheReindeerJumper · 10/12/2011 08:48

I was told by grandparents that my DD did not have autism..when she has a severe ASD DX...it is quite common I'm afraid. I second not waiting until 11, we thought nothing would change with DX but a lot of doors opened.

Dawndonnathatchristmasiscoming · 10/12/2011 10:16

Ds2 dx at seven.
Ds1 dx at two.
Ds2 dx at six.
So, load of bunkum. Keep pushing.
As for grandparents, talk to them, firmly and calmly and tell them what you have told him, what the doctor/school etc have told you and that if he wants noise cancelling headphones when he's with them that's what he'll have, and if they tell him he isn't autistic, then they're not acting in his best interest.
Grrrr!
Been there though.

saintlyjimjams · 10/12/2011 15:09

A dx weds to come from a paediatrician or clinical psychologist really (if you want it to be robust). Have you had a referral to either of those? SALT/Senco/GP etc cannot diagnose.

dazeykat · 10/12/2011 17:21

This sounds very peculiar. Are your health authority trying to disguise waiting times for diagnosis by refusing them? Ring NAS helpline for advice. Also how are you supposed to access DLA, if applicable, statement, support etc if no diagnosis? You should make a formal complaint, perhaps via PALS, stating exactly how lack of diagnosis impacts on you and your dc. Name the professionals who told you 'unofficially' your child has asd.

Family members' denial is hard to deal with, I know. Diagnosis will help. Good luck :)

imogengladheart · 10/12/2011 18:36

This reply has been deleted

Message withdrawn at poster's request.

Original poster

ihatecbeebies · 10/12/2011 18:45

I've not been referred to any of those no, there is an official Autistic Diagnostic Team for my area and you need a referral from two different professionals, eg EP and SALT, but I've not heard any mention of paediatrician or clinical psychologist. The gp also said that because the school 'got the ball rolling' with regards to a dx (they didn't, I approached them!) I've to let them do all the referals. Would I be able to just go to my GP and demand a referal to a paed or a clinical psychologist?

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Original poster

ihatecbeebies · 10/12/2011 18:48

Imogen, that sounds like my situation and I'm in the west. HV, EP and SALT haven't got back in touch with us with regards to trying to get a dx, and they all agree that it's normal to wait until the end of primary school. No doubt once we get to p7 we'll be told he's went that long without a dx that he wont need one or some other excuse.

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