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JenRose

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M has been going to CAMHS for a year now and we had the results of the ADOS which they say shows he is not ASD.

We disagree and can see a long battle ahead while they try to eliminate everything else that it could be.

 

I was talking to a lady the other night and it took her 4 years to get a dx of ASD for her son.

 

Is this normal and if so why the reluctance to dx?

 

thanks

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I was talking to a lady the other night and it took her 4 years to get a dx of ASD for her son.

 

How old is your child??

 

I first started suspecting when T was around 18mths - 2yrs of age that he was Autistic. A ,long battle then emerged and it took me 4yrs to get him referred by his Pead to the Autism assessment clinic where he was finally dx at aged 6yrs old.

 

I guess it all depends on the area you live too.

 

If your child is young, they be reluctant to dx until say around 6-7yrs of age incase of wrongful dx. I know some like to wait until the child is in education so they have reports from the schools too (as people in frequent contact with the child).

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First saw the paediatricians when he was nearly 2.5yrs, got a formal diagnosis when hwas was just over 4yrs old. Although it was 20mths that we'd been under the services we'd only really felt a diagnosis was hlepful a few mths prior to getting it. The reasonfor delay with us was that the siutation with DS wasn't clear. From the outset we knew ASD was a strong possibility but because of his age and the normal differences in child development it was possible he could mature out of some it with time. Also it wasn't clear whether he has a primary language disorder which can often give a similar picture to ASD. As time went on, he got a little odler and his language improved it became more clear he still had autistic features and as he is due to start school having a diagnosis would mean more doors being opened to us (until then he had help based on his needs) and thankfully the paediatrician agreed with us

 

Lx

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M is 9 and we have been told by CAMHS that they dont think he is ASD and that he has sensory,communication difficulties and severe anxiety and thats what his problem is.

 

We dont agree especially since i am AS and i know the signs and symptoms and i recognise in M things that i went through as a child but getting them to listen is another thing.

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M is 9 and we have been told by CAMHS that they dont think he is ASD and that he has sensory,communication difficulties and severe anxiety and thats what his problem is.

 

We dont agree especially since i am AS and i know the signs and symptoms and i recognise in M things that i went through as a child but getting them to listen is another thing.

 

Yep, I had this problem about getting them to listen. It took a lot of bad things to happen before the ball started rolling and once he was referred, he was dx within 5mths. It is a long hard battle and I knew what was wrong with him and as long as you stick to your guns, you'll get there in the end.

T was dx with global developmental delay as a toddler but that was erased when he was given the formal dx of HFA. He has also got dx's of sensory integration dysfunction and hearing loss.

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Hi we always knew Matthew was different right birth, he was always a difficult child, hard work but was always fobbed off by HVs and other parents by saying he is just a boy, or the terrible 2s and he will outgrow it! even the school nursery didn't think there wasa problem, even though it was a huge battle getting him in there every day for a year (huge tantrums etc which was hard espeically with another little one) by 4 1/2 I took him to the GP who reffered us (we were thinking ADHD at the time, but knowing my grandad had AS we were begining to think this), by april someone came out from the mental health team and did an initial assessment on him and agreed that it was more likely Aspergers. by may we were seen by a pyschologist and said that he would be assessesed over 13wks. so that is what happened and by september (he had seen playtheropists/pyschologist/pyschiatrist and a nurse had visited the school and monitored him over a day) so by sept we got his diagnosis of AS at 5yrs and 2mths.

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Here,s the thing, M was referred to Clinical Psychology in Feb last year by our GP.

Clinical Psychology saw him from April to Oct last year a total of 10 times, they were so convinced he was ASD they skipped over the referral to the Paed and referred him straight to the Psychiatrist who is ADOS trained.

 

In the meantime one of the 2 specialists left so we were faced with a long wait, M came out of school as he couldnt cope so we were given an appointment with a psychiatrist-a junior one.

He disagreed with everything we said, tried to overturn my dx of AS and virtually accused us of MSBP.

 

We complained to the consultant psychologist who saw M originally and she got us in to see specialist.

 

Psychologist phoned me on Thurs to say "dont be surprised if you get told he isnt ASD, but you are coming back to me and i am going to help him"

I knew then that we werent going to get the dx.

 

Why are we being taken back by original consultant when they have psychologists at CAMHS who can help M with his anxiety?

 

Is this normal practice does anyone know

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i throught there was something wrong with my daughter but couldnt put my finger on it you see i have 4 boys so i was told girls are diffrent form boys but i keeped on asking than i throught it was here pumps she as bad asthma and taks a lot of pumps becouse she was cying all the time and you ask her whats the matter and she would say i dont know and terrable bad mods hitting out all the time and all so the way she was very shy round family and friends so one day i phoned the heath vister so she called and i told her and she said i throught there was something wrong but i throught she would grow out of it she is know 6 and we are in the middle of finding out but they have told us she is autistic aspergers but how bad we dont know yet so one day at atime all the best to you and dont give up becouse i have a 21 year old with prolems and they told me there was nothing wrong with him and he find life hard becouse there is no help for the older ones so fright for them now wail they are young sorry to go on all the best jill

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I know there was something wrong with my son from birth,he never slept,head butted everything from 6 mths,everything was a struggle.He was seen by occ therp when he was 5 years,dx lone muscle tone.Still not happy as behaviour got worse my GP ref him to pead,she told me that i need to do a parenting course :angry: .After 4 yars of hell with him thing came to a head when he had me by the throat,i was given a number for INCH a support team,it was them who suggested asperger, and sent a letter to CAMHS as we were on the waiting list for family support :angry: .

The first meeting we had back in october 05,they seemed to agree with asperger,we are now waiting to see how far in the spectrum he his.

If you believe that somethings there and you sound as you know what your talking about,you keep at them,keep a record of everything that happens and keep at them you get there.

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i always knew something wasnt right with my daughter since about 1 yr old.by three she saw a child psycologist, who said she was normal but naughty. she finaly got to see a paed when she was five. 6months after she started school. right away they said she had damp syndrome, but the consultant ordered a full asperger assessment on her. a year later they considered she didnt meet full criteria for aspergers, so she was dx with pdd-nos. the consultant says that the dx may be revised in time as difficulties become more apparent as they get older.

 

my son is nine, again he apeared "different" i thought it was strange how he never used to seem to interact with people, how he used to cry when we tickeld him even as a baby.i thought he was very strange as he never seemed to have any interests or anything he liked. he just used to like cars, not to play with but just collect and line up. he hated going out and would go crazy in the car, telling us we were going the wrong way all the time, he never seemed happy and never laughed or joked.

hes much more passive than his sister so his difficulties were never picked up in school. we got him refered just over a year ago, and with all the assesments, its become clear what his difficulties are. it seems hes learnt some very good coping mechanisms. hes due for dx appointment on 13th feb, its looking very likely he will get dx with an asd.

 

i have heard now a few stories of people saying consultants are reluctant to dx. i have no idea why, but it seems to be getting rather common!!

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Our dx took along time, a very long time (years) As with most of the parents on this thread we suspected things were not normal from birth. Hindsight is a wonderful thing but at the time we knew no different. At the age of 4 he was referred to a psychologist who said he was "too attached to his mother and too anxious" and needed play therapy. :huh: We never got the opportunity to have play therapy because soon after that we moved to England from South Africa and K found things difficult as he had missed out on a year of schooling (they start school in SA at the age of 7 we arrived here at the age of 5). The school did little to help they suggested hearing tests/speech therapy but it never materialized and the waiting lists were too long and he got lost in the system. He plodded though the next few years and was dx with Ulcerative Colitis, inflammatory bowel diseases (that dx distracted us away from the dx of AS for a while).

 

It was not until we moved and he was put into a different school with a smaller class that his difficulties became apparent. His teacher told us that he had some sort of "deficit" so in order to find out the problem we paid for him to be assessed at the Dyslexic ass and the physiologist could not put a finger on the problem that cost us ?300 and we were not better off. We had to get answers as time was running out he was starting high school and we wanted things to be sorted out before he was a "little fish in a big pond". I continued to insist that no matter how normal he appeared his differences would soon need attention.

 

Our Gp referred us to the Family Consultation Unit (he was suffering with depression) who dx him within 3months but it was a very long process over the years. He is now 12 with having had the dx in Nov 2004 at the age of 10.

 

Hope this sheds some light. Never give up, mothers instincts are usually right.

Best of luck

Justamom

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it depends on which way you look at it from health visitor to specialist then 3 years, or just the specialist it was about 30 minutes! its really obvious that tricky is an aspie it just took a long time to convince my health visitor/gp.

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I am going through the process of getting a diagnose for Luke. I Knew things were not right when he was about eight months old. I kept going back to the health visitor and GP. Finally when he started nursery in 2004 the nursery also notices he had a speech and language problem and as they put it showing signs of autism tendencies. He was referred on to the PREFCAT team. Now after nearly three years of fighting I am hoping to have diagnoses in March

I feel like this is the hardest battle I have had to fight. Fed up being told I was a neurotic parent. Banging my head with all the different information I have been given.

Finally I am hoping there is light at the end of the tunnel. What really made me angry was even the other children in his class noticed there was something different about him and kept asking the teachers why he could not speak properly, why did he lash out at them, and yet the so called professionals just dragged their heels. You get the feeling no one wants to be responsible for given you that final diagnoses. I was told by one professional they are weary of making such diagnose as they have been wrong in the pass and have either been threatened or sued by parents for the incorrect diagnosis they have made. So this could be one of the reasons why it is taken so long

In the mean time as a parent i fell like i am slowly going mad

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Logan (2.5) was first seen at around 13/14 months although we knew he had problems before then. We were told autism was likely when he turned 2 and got a formal diagnosis after a weeks assessment at 2 years and 3 months. He has been getting SALT, physio etc since he was first referred though. I think we've been fairly luck in the care we get here.

 

Lynne

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im confused, if M,s clinical psychologist was convinced that he was ASD then why didnt she dx him?

She sent him to CAMHS for the ADOS which the psych says shows he,s not ASD cos he has imagination and ASD kids dont have that :wallbash:

 

The psychometric test showed very superior range with high obsessional behaviours and they were sure that he is ASD.

 

Can a clinical psych dx?

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I think who is allowed to make a diagnosis varies within health trusts. Normally, the diagnosis is made by a team of specialists rather than one individual, but clinical psychologists are sometimes used as part of that team.

 

A's diagnosis took about 9 years. He stood out as having difficulties from birth, he didn't sleep, didn't respond to others, spat all food out of his mouth, didn't crawl, doctors refused to vaccinate him on several occasions because they were concerned about his distressed state on just entering their office. Concerns were again expressed at one of his routine assessments, I think he was about 3, and he was referred for speech therapy. The referral got lost and wasn't followed up. When he went to school there was again concerns about his speech and this time he did get to see a speech therapist. She diagnosed Semantic Pragmatic Language Disorder (this is now considered part of the spectrum, but the word autism was never mentioned and he certainly didn't get any extra help at school). Looking back, the SALT did hint around the subject but she was never explicit and I never picked up on it, would say things I understand how you feel, I too have a son who is "different".

 

Throughout his Infant and Junior school years I took him to the GP over several things which with hindsight should have given them sufficient clues to send him for assessment but it never happened. Finally, at Secondary school things got out of hand and the Educational Welfare Officer wrote to our GP saying that A was not coping at school and that she thought he had both AS and Dyspraxia and could he be referred for assessment. Even then, the GP would only refer because we said he wasn't coping at home either otherwise he considered it was a school problem.

 

We were told we would have a wait of up to 18 months but things got so bad that I took A back to the GP who phoned and got an appointment for the next day. We saw a multidisciplinary team and he was dx'd there and then, we were told that it was unmistakeacble particularly with the history we were able to giveand the information that was already on his medical records. By this stage A was 12 so a delay of at least 9 years possibly more. Over the space of the next 6 months he saw a Paediatric Psychiatrist at CAHMS who, since the dx was made so quickly, needed to confirm that it was correct. She has since confirmed it.

Edited by Tez

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thats awful tez that your son had to wait so long.

just spoke to M,s clinical psych and she is really surprised that the ADOS says no and she said lets sort out the anxiety problem first, yes but whats causing it? i know and so does she. i think its going to be a while before M gets his dx. IPSEA told me that without a proper dx its very hard to get help at school and thats wht im pushing for one to be made.

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IPSEA told me that without a proper dx its very hard to get help at school and thats wht im pushing for one to be made.

 

The Educational Welfare Officer told us that as well, that's why she wrote to our GP because she said that he needed the dx to get the support he needed and she was concerned about what would happen if he didn't get that support.

 

What on earth has happened to our education system that even when it is obvious a child needs additional support you can't have it without an official dx.

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I just phoned the NAS and advised them of M.s situation.

 

The lady said that a decision should not be made based purely on the ADOS and actually told me that the psychiatrist who M saw last week isnt the specialist in our area.

The name of the doctor that she gave me is the one who clinical psychology originally referred M to but somehow he didnt get to see him and ended up at CAMHS instead.

 

She said i should ask for a rereferral to the paed

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