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Please help, been told son not autistic now what?

26 replies

mrshess · 26/07/2010 20:22

So after 2 years of being messed about they have said my son isnt autistic. I do have serious doubts on this and i feel my son is more Aspergers than autistic as he is very chatty. Im not well up on this so would the ados test have covered aspergers as well?
We were told to go on a parenting course as apparently my son loves controlling us and basically thats it
I havent stopped crying as i thought we would have had answers by now and i know my son does have issues which arent about control.
Has anyone had their son or daughter told they are not autistic and then later down the line they are diagnosed?

OP posts:
siblingrivalry · 26/07/2010 20:34

Yeah, I had exactly the same situation. I really feel for you -it's so hard to cope with.

We were referred to CAMHS, where a cow nurse said that dd was anxious/controlling/obsessive etc. We were also asked to attend parenting classes. ASD was ruled out because 'she has good eye contact at times and is talkative'

Like you, we knew that this wasn't the answer, so we said so. When dd's OT report came in, it said she had severe sensory issues. Her SALT said she had social and communication difficulties. Her psych said she has inflexibility of thought. Yet this nurse still tried to lead the other professionals into thinking it was all down to our crap parenting.

Anyway, we got a private paediatrician involved who immediately gave a dx of Asperger's . He was very experienced in ASD and had no doubt at all.
I went back to CAMHS armed with his report and they backed down and agreed they had it wrong.

What I'm trying to say, in a long-winded way, is that you need to trust your instincts. If you believe there is more to it, don't be talked out of it. 'Experts' make mistakes - too frequently, but that's another story

Who did the assessment for you?

mrshess · 26/07/2010 20:49

The ados assessment was carried out by 2 speech and language therapists and the developmental history by a psychologist.
When i got told he doesnt have autism in the final report which i havent got yet gave clear warning signs to me but the psychologist shrugged them off
1)Son was observed to prefer to play on his own and if had to would play alongside children but could become aggressive
2)Son much prefers adult company and sees himself as a grown up
3)Language he uses is formal
4)Son not able to pretend play at home or during assessment (he is nearly 4)

The developmental history failed to mention key points such as he shows us no affection and his no sense of danger.

I just dont know what to do as we cant afford to go private.
Did you play along and do the parenting courses?
Without the diagnosis we will get no help and im starting to drown

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siblingrivalry · 26/07/2010 21:19

No, we didn't go to the parenting course - it's very much an individual choice, but we just felt it was a waste of time.

I can completely understand how frustrated you are,the dx is the key to lots of services.

I had other problems with CAMHS (there's an old thread lurking somewhere) so I had to send a written complaint to the regional director.

NAS have some information on how to proceed if you are unhappy here and might give you a few pointers.

I also understand about the finances -we had to borrow from a relative for dd's assessment, but were really fortunate to find a paediatrician who wasn't out to make money from his patients.

Don't give up, you are your son's only advocate and you know him better than anyone. The ironic thing is that his difficulties will become more obvious as he gets older, but you need help for him straight away.

And keep posting on here -the people on this board have a wealth of experience and you will get some great advice. I will keep this bumped for you.x

Tiggles · 26/07/2010 21:30

My DS (now 8) is awaiting an autism review, however, he was initially diagnosed at age 5-6ish with a school related anxiety (producing symptoms to look like Aspergers) but not actually autism. At the time it was a big relief - it meant something could be done about it and hopefully it wouldn't be a lifelong condition. Not quite sure how I would have felt if it had been put down to my parenting skills - well obviously very affronted, as far as the school was concerned all issues to do with my son were down to the fact he had a new brother (ie they thought it was a parenting thing).
So whilst being relieved that DS didn't have Aspergers I did still implement some techniques that I read could help, eg DS used to ask the same question over and over again, I read on a forum that the answer could be written on the fridge they knew where to look for the answer. We tried to make sure that he had routine and structure where we could (ie at home because the school didn't give a stuff).

Anyhow now another couple of years on and in a new area having moved, and the local CAMHS team think DS DOES have Aspergers and we are on the waiting list to be seen. I genuinely don't know if I want him to be diagnosed, to explain why he is how he is, or that they put it down to me - so I know he can be sorted out and hopefully become a 'normal' adult.

Sorry waffling (As per usual, but wanted to give some background as to where I was coming from) but I think that if I were you I WOULD go to the parenting course, it can't do any harm, they may be able to help with his behaviour (Even if it IS autistic behaviour), if they can't help, then that only gives more ammunition for further assessment.

I guess if he is nearly 4 that he will be starting nursery in September then school the year after? Certainly the nursery that DS2 is in (attached to a school) are looking out for basic symptoms of ASD - on his 'report' they look for appropriate eye contact, interaction with other children. If they see a problem (hopefully) they will say something, again giving more ammunition to go back for another assessment - as they will get to know your child better in the time that he is there than a professional will in a couple of hour assessment.

Ineed2 · 26/07/2010 21:39

12 years ago something similar happened to us with Dd1 she was on the verge of being dx'ed adhd when suddenly the psychologist who had been seeing her on and off for 5 years decided it was my "parenting style" that was causing her problems. We are now more or less certain that she has an asd. One of my biggest regrets is that I didn't stick to my guns. She was my first and I was totally overwhelmed by her behaviour. Having had Dd2 who is as nt as they come and now having Dd3 who is being assessed for aspergers I am even more convinced that I am right about Dd1. Whatever you decide make sure you have explored every possible area even if it means going private.
Sibling rivalry is right, you are his advocate and you have to do whats right for him.
Have you recorded/made notes about his behaviour/chalenges so that you have the information to hand during appointments, I always do this because I forget what I wanted to say when I get there.
Good Luck. and remember you know him best.

justaboutblowingbubbles · 26/07/2010 21:51

This reply has been deleted

Message withdrawn

bugglyluggly · 26/07/2010 21:58

I was in a similar situation. I suspected DS had AS and asked for 'an assessment' from CAMHS (didn't know about ADOS, MDT back then). A single psychiatrist observed him in a 1:1 situation and noted that he made eye contact, engaged with her, but didn't take any information from me or from school. On that basis she said that he had attachment issues due to his early life (was looked after by grandparents and raised by me as single parent).

I didn't agree and went to a private paed who made a clear dx. Had to borrow to fund it but I think it was the right thing to do - you can push for a second opinion but I didn't know how long that might take. DS was older than your son so I feel that time was against us. I'd say your situation may not be so urgent, but then again earlier intervention is always better.

I subsequently got other assessments done as part of DS' statement and there were NO professionals who disagreed with the private dx (and many who were baffled by the first dx).

I had a meeting recently where the CAMHS psychologist admitted that there were clear AS traits all along and there was absolute consensus that the AS dx was correct.

I would recommend looking at BIBIC - they do assessments which look at needs, but not diagnosis. £50 for two days (plus travel/accomm). They provide a therapy programme to carry out at home as well - frankly probably more helpful than OT you'd get on NHS (but I wouldn't know, we've never had any).

If you do pursue a private dx, choose your paed/psych very carefully - mine was also an NHS paed and very well respected.

I was never offered a parenting course, but was given therapy, which I went along with. I don't feel it was necessarily suitable, but it wasn't damaging and it meant that we were still getting access to services and showed willingness to be a supportive parent. So I personally would go along with the parenting course, if only to be able to say 'we've done this and the problems still remain'.

I would also say that the most useful interventions are often provided by the parent in any case - things I've learnt from books or workshops. You don't necessarily need a dx to access these. So if you feel that some of the strategies will help, give them a try and don't worry about whether the label fits. In practice, I think SALT/OT which is provided isn't much more than giving exercises for parents to carry out anyway.

mrshess · 26/07/2010 22:12

I really appreciate replies i have no one to talk to and feeling pretty down atm, can anyone who has had a private diagnosis would they mind telling me how much its likely to cost?

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siblingrivalry · 26/07/2010 22:43

I think ours cost £150, mrshess. Although I think this is at the cheaper end of the price range.

logi · 26/07/2010 22:51

Hi mrshess,my son did the ADOS test and it came back "not autistic" but they could see he liked to be in control and something was different so referred him to CAMHS where he was watched over 5 hours a day which built up to 4 days a week...he was then diagnosed "autistic spectrum disorder".....my son does make eye contact and his speech is excellent so much so that his psychiatrist told us that this is why other people had failed to diagnose him his speech sometimes is older than his years.(little professor syndrome)
My son also likes to control every situation ..we were told when he was young that he was just a controlling child ,when we went to CAMHS we were told they could tell he had autism within 5 minutes of meeting him because they knew what they were looking for and we were so grateful.
I hope you get the support your son needs

mrshess · 26/07/2010 22:54

Thanks sibling rivalry i was expecting a lot more than hundreds so going private may be an option.
Would you reccommend the person you saw?

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mrshess · 26/07/2010 22:56

Logi they arent referring him anywhere unless his issues with dirty/wet clothes and food carry on.
They have basically said my son contols everything and we jump to it

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siblingrivalry · 26/07/2010 22:57

I definitely would recommend him, but not sure if he is taking on any new private patients. We are in the north-east -if that's any help?

mrshess · 26/07/2010 22:59

I live in manchester but would travel up to a couple of hours (son a nightmare in car)
Whereabouts in the north east is he based?
Also sorry for all q's but how many sessions were there involved?
Thanks

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siblingrivalry · 26/07/2010 23:05

No worries - ask away!

There was just one session -we filled in a lot of paperwork ahead of the appointment. He then looked at dd's cognitive abilities and did a variety of tests and assessments.

He then sent us a report and a diagnosis.

If you like, I can email him and ask if he's taking on any new patients (due to retire soon).

Please don't feel obliged to follow up on it -it's just a possible option if you need it.

mariagoretti · 27/07/2010 05:35

A few areas run parenting courses modified specifically for kids with asd or ADHD. The leader put it like this 'your skills are already above average cos your child is harder than most... but they need to be degree level for you to carry on coping'. Agree it's worth considering the course to show willing and prove that problem isn't just parenting... Chat to the tutor beforehand so they know ur situation & can make the extra effort to ensure u get something worthwhile out of it.

hanaka88 · 27/07/2010 08:27

Cahms won't look at my son till I complete a parenting course, even though I have a degree in early years. Paed referred my son for ass tests tho so I'm going to complete the course then I get no come backs from cahms and anyway they might have an idea of managing behaviour that I haven't tried yet so it might be useful you never know. Even if he has add behaviour still has to be controlled

mrshess · 27/07/2010 13:38

Siblingrivalry yes i would appreciate you finding out if he is taking new patients thanks x

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vixen1 · 27/07/2010 19:02

Hi, I just very quickly want to "tag" this thread so I can find you later... I'm at work...

vixen1 · 27/07/2010 20:09

Mrshess - I just wanted to let you know I'm in a similarish situation myself so I'm following your thread with interest. My DS is 2 and a half and has confirmed Autistic traits although our Specialist has said he definitely doesn't see any ASD. I don't really understand this since surely having traits would mean he IS ASD but perhaps PDD-NOS side of the spectrum.

Sorry I can't be any help but I'm hear if you ever want to chat...

xx

siblingrivalry · 27/07/2010 20:44

No problem, mrshess -I will email him and get back to you. He sometimes takes a while to reply though!

mrshess · 27/07/2010 20:44

Vixen i would love to chat as i honestly dont know where to turn to next. Our son also has traits but is too social to be diagnosed. I honestly feel we are being fobbed off and i was hoping we could get some help for my son. I was hoping to go to some support groups as i have lost confidence taking my son out on my own, but now we have no diagnosis i wouldnt feel right about going but then my son cant really go to normal places as he cant cope so i feel we dont fit in anywhere.

Have you had an assessment Vixen and they have said there is no asd? or will they not test him?

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graceconell0147 · 30/10/2019 17:28

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