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how long did it take for you to get a diagosis?

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Hi

 

Both my boys were referred at exactly the same time. From referral to diagnosis for my eldest ds it took 6 months and for my youngest ds it took 11 months. This shows you that it really does depend on the difficulties a child has and on the quantity of assessments necessary to identify the specific difficulties. My eldest son was very straight forward; he is text book Aspergers. My youngest son was a bit more complicated and even now I find myself questioning his difficulties from one month to the next! Even the diagnosing consultant wasn't sure because on a bad day he is autistic and on a good day he is just quirky with dyslexic!

 

It also depends greatly from area to area and particular consultants how long the assessment process is.

 

Flora

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just wondering how long people waited?

 

My daughter was diagnosed with dyspraxia age 5. we had help etc, but nothing since age 10 she is 12 now. Went to see GP becaues of bed wetting (had already seen consultant, but needed another referal) spoke with GP about all DD's other issues, list v long. as I am sure you can immagine. She said that she felt perhaps there was some AS behaviours that were obvious. Made an appt to see consultant, who is quite well known in this field. had an appt within the week, immidiate diagnossis on spending time with daughter. (it probably helped that daughter had her precious bendy straws coming out of every pocket, and became distressesd when she lost 1. Was diagnosed with ADHD as well as AS. RX for ritalin, have found when she takes it the bed wetting is much less. Hooray!!!!, she has since got a certificate for cooking at school. And a certificate for academic improvement. Yippie!!!!!!!!!!!!!

Now we know why she has meltdowns, why she talks for hours about ---anything---- why she finds friendships hard to maintain etc etc.

 

So to cut a long story short either you could say her diagnosis took a week, or perhaps it really took 7 years. I so wish I had my marvelous GP all those years ago, I also wish I had made more noise sooner!

 

love Harmony x

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3yrs for older dd because no one believes us and no one listens and they now try and say just an immaturity

 

Cant afford to go private so i just agrue with them all untill they will take us sersiously.

 

 

Waiting 2 years for younger dd just thought i would add, pead now refuses to see us all as she said there was nothing wrong with my younger dd who has processing diffculties and expressiv language delay

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We must be around 3 years + now, although dd is only 6. Up till now they have not been happy to dx, as it could be an immaturity probably. But I know my dd....

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Kieran was statemented with learning disabilities at 9 but he was referred to cahms when he was 16 1/2 and he was diagnosed a month before his 18th birthday

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With eldest we referred to HV at age 2 1/2yrs, 1st appointment at CDC just before his 3rd birthday, PDA was recognised at age 5 and then confirmed at the centre in Notts when he was just over 7yrs.

 

(PDA was even less well known at that time outside Nottingham, so he was a bit of a puzzle despite having numerous tests, and spending a term at the nursery at the CDC.It was only after the SALT had received some training and went through the checklist with us that PDA was mentioned)

 

 

With youngest refered at 2yrs 3mths approx. 1st appointment at CDC age 2 1/2 yrs, diagnosed at 2yrs 10mths with autistic spectrum disorder.

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Almost 5 years of fighting!!!! although once they decided to do ADOS is took approx 7 -8 months................ not been easy at all :wallbash:

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Bout 9 months. I think it was easier back in the day, though it seemed like a big fight at the time. School was on our side though, which helped.

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Just under a year for each of my boys. But it was more because we went around the houses with my older Son with AS, and finally one of the people we saw at CAHMS referred him to the Dr who dx'ed him. Now i have Eilidh and worry that her development is not as it should be so i know exactly where to go now, i have their phone numbers- they can't hide :devil:

I am shocked at how long most of you are having to wait, it's an outrage!

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i was off dx wid AS at the late dx age of 14 yrs old wich has affected me pretti bad esp wid the total lack of understanding, help, awareness n support still not enugh to go arund to help everybodies families n individuals wid AS/ASD n related conditions i bin throu so much fighting n battling wid all kinds of stuff, still am ive always known sumfink was not rite inside of me sumfink didnt feel quite rite ma family knew it deep down inside of them too.

 

i have years of battling wid maself n the system esp education sys as wen i was younga quite poor at generalli sympathising or understanding n im not blaiming everyfink onto them but i feel thats why i such a angri hatfuk person at times becuse of the lack of reasons of y me n ma family was let down n disappointed all them yrs ago it hurts personally u feel it a personal attack on u n ya family.

 

CAMHS havt realli bin there from day one anutha disappointment afta anutha it gets me very low n down ova alot of differ fings i got alot of unanswered questions that il neva get full answas too but its ok for pyschs n teachers they can go home or their happi lives we have to live n breathe it but they no time out no head space for us or our families no where to hide n run n blame someone else for there mistakes n excuses pathethic ones it upsets me alot

 

ive bin going ova alot of ma past recentli n i havnt realli had a childhood, puberty/adolscence becuse of AS n what it dune to me having so many probs wid it living n coping wid it as i have mental health probs too n im ashamed / embarrassed of having everyfink needing support n helpi like being independant.

 

y do we have to go throu so many probs before we get a actual propa off dx i wana know y i slipped throu the net/sytem so easily when peeps as young as 2 yrs old r now being off dx wid AS mayb u didnt have propa med terms at that stage but y not help me u knew i had special ed needs u knew i was fighting a losing battle n so was ma family wid me we were on our own i feel betrayed n belittled.

 

y do we have to struggle n beg for help is that rite these days just becuse u cant c our condition doesnt mean it not there just like mental probs!

 

anyways enugh off me going on about nufink! soz to bore u out ya heads totalli but has to be cay the way it is honest or not! im going to say it it makes me sad,livid n annoyed.

 

there needs to be more awareness n less judgement n stigma behind having any kind of ASD!

 

Love ya loadz

KirstXxXx

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its taken about 3 years to get classroom help to Ryan's dificulties coming to the surface last Sept07 when he started high school at 11 years. Whats the rush in England to send your kids so young.

There is 1600 students at heysham High, 4 building blocks so his fear escalated, Sen officer in school saw the low attention span, non response to instructions and out bursts of what we would call rude matter of fact back chat with the teacher.

 

School Peaditrician, Education phsycologist, LEA officer, multi agency, 7 months.

 

Now moving to a country high school with only 180 students including a lot of special needs support. Success at last. Gilly x

Edited by Kathryn

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J was 4 when diagnosed with dyspraxia (nursery picked it up) . But he wasnt diagnosed with asd until last year hes now 11.

Hes my first child and i didnt really have any comparisons but i guess trying to figure out what was dyspraxic behaviors and what was "something else" was the hardest bit for me. I knew something wasnt quite right when he was 6 or so and my other lad (then 3) was over taking him socially etc. But i had a fight from there as school wouldn't say they were seeing anything and i had to go over their heads in the end and break down in front of the consultant to get a referral to cahms. That process took about 12 months all in all as i had to do the usual routine of parenting classes and "talks" on how to handle behaviors for them to see i had tried everything.

I have been fighting for 6 years to get the right classroom help and a statement based mainly on his dyspraxia. This year now he goes up he has 22 hour statement and a secondary place at a special school with 80 pupils). My hardest fight has been the school and still is, but not all schools are the same hopefully it will be alot easier next year.

 

The biggest thing i have learnt is that we know our children best!!!. i have learn't it the hard way, i have doubted myself and others have doubted me much to their regret as no apology will be good enough (even family) but i knew that something wasnt right and i stuck to my guns.

 

soo back to the original question :whistle: me waffling lol about 6 years :lol:

Edited by rach04

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Hi ...it was about 4 months ....he was referred via school to camhs as an urgent case as emotionally he was in a bad way, the dx came about during the statementing process.

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My son used to have epileptics seizures and all of his problems were put down to that as the medical profession believed that he could of had brain damage due to the seizures, he was medicated for 6 years and it was believed that this also had a bearing on his development. He was nine when he was diagnosed officially with AS but we raised concerns from him being 3yrs old.

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Tried to get a referral since DS was 13 months but just got fobbed with "terrible twos", moved to Devon in July, new HV etc, she referred in September 07, got initial meeting / prelim diagnosis in Jan 08 then was on waiting list for 6 week assessment group which started on Friday just gone :)

 

Forgot to say DS is 3 years 4 months now

Edited by rocketgob

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We asked our GP for a referral last October (demanded actually!), we were referred and got an appointment for this month and got the diagnosis there. So 7 months from referral to diagnosis - although we were questioning things with our HV when he was at nursery so it could really have happened a bit sooner.

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It took 6 months for my first ds to be dx aged 3yrs.....I had a few concerns about him so asked Hv who referred him to child development centre, got seen pretty quick, pead then said poss ASD so ds attended for ten weeks at cdc to be assessed...was given dx of asd at team meeting.

 

Hv had concerns over younger ds (i wondered at time if perhaps was a lot of copied behaviour) so asked for Pead to see him too.

Pead said he displayed asd traits but we both agreed to wait and see for a bit, next appointment after it had become more apparent he dx younger ds aged 4yrs with asd, that was with pre-school and salt reports too. The last bit of the process only took 6 months too.

So guess we were lucky.

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23 years 11 months 25 days and counting.. This time around it has been about a year so far. Done the rounds of psychiatrists and incorrect diagnoses over the years.

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We are still waiting for a dx and have been in the system for about 5 years now as DD seems to be very complex and previous school just dais DD was doing ok. Since starting new school however, and with their support we are getting closer and hoping to have dx from CAMHs soon. Got a meeting in a couple of weeks so fingers crossed.

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Hi we waited just 5mths to get seen from going to the gp to be referred. then it took just 3mths to assess and dx at 5yrs 2mths.

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some peeps seemed to have slipped out of the net wid all the systems somehow like me or have unhelpful peeps telling ya their nufink wrong ewid ya child ya just an ovaprotective mum thats wat ma mum got sed to her disgusting in ma eyes a mother trying to get justice for whats rightly mine a dx waited yrs n hasnt dune much having a name behind what wrong wid ma brain n why i dunt work like ova peeps ma age does!

 

i get so angri n annoyed nut then feel guilty but mental health service hasnt helped me in a nyway or ma family maybve it hlped ovas but for me been wid 14 now 18 dune naff all! but there u go!lol ma adult team pysch seds heres meds anti depress c ya in 2 mths time bi well send out a appointmnt letta! im was so shock n taken abac from that response i have serious mental health probs i dunt mean to sound selfish or cruel but i bin desperate for help n support propa for yrs now it stupid the whole fings needs re-organisng n starting agen i culd do a betta blimin job than them they cay abotu gvrnmnt cutbcas excuses in ma books ma eyes they always do find sumfink to ###### bac on!

 

soz about the long whinge about mental health service n what i dune to me anyone else wana talk about theri personal experiences wid mental health team if it worked or didnt worked! start offa new topic/convo shuld be abit if debate in there sumwhere!lol

 

take care everyone

 

love ya loadz

KirstXxXxLoU

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11 months from very first referral to HV to formal diagnosis. Although we got an informal diagnosis after 2-3 months. He was only 13 months when he was referred though and 2 and 2 months when we got the full diagnosis.

 

Lynne

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my ds was seen when 3 and i was told nothing wrong with him!! He was diagnosed 2 and half years later when he was 5 1/2.

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J was referred feb last year and got his DX in october last year so 9 months in total when we were told it would be about 12 moths

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Started asking them to check him out when he was 3 but only in the last 6months after a second doctor saw him n immediately referred him have they actually done stuff n checked out what he has etc and in the process of getting the 'official' diagnoses but have already been told he has OCD, Aspergers, and ADHD.

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Anyone explain why our dd who is now 7 and been under pead for 3yrs hasnt done any formal assessments as we feel she has ASD but the pead only considers the view of the school.

Do some pead wait to see if children midley affected out grow immaturites - just looking for reasons why were still waiting.

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just wondering how long people waited?

 

 

I have been trying for nearly 6/7 years to get someone to take me seriously about DS2. He was 3 when i first shared my concerns with the HV and GP but as nursery had no concerns I was told it was a clash of personalities :huh: Finally someone listened to me 2 years ago and we had a meeting last year with a specialist peadiatrician,I was then told I would be sent another appointment which I got last week and its 2 days short of a year since the last one. TBH i'm not expecting anything , I think they will fob me off but we'll see

 

Viv xx

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