aspergers - age of diagnosis

[star]

Just wondered at what age this could be diagnosed? Due to speech not being delayed I would imagine that it could be difficult to firmly state in pre-schoolers?

 

Thanks for any info.

[summertime]

I work with some reception children who we suspect will eventually be diagnosed as AS, however the paediatricians are delaying further investigations due to age and the possibility of the problems being caused by imaturity. However I believe this is more to do with an overstretched NHS than the difficulties of diagnosing at this age

[cmuir]

Hi

 

I would certainly agree with that comment that delays in diagnoses being made are partially down to budgetary reasons within the NHS. The minute you get a diagnosis lots of services become available, all of which costs money. These include learning assistants in mainstream school or a place in a specialist school, DLA, etc etc.

 

The average age for a diagnosis is around 8 years old and that is also due to the fact that problems become more obvious the old a child becomes. It's generally from the age of 3 years that specialists agree to become involved.

 

In my experience, I got a diagnosis for my 4.5 year old son 3 months ago and that was after battling and arguing like crazy with a lot of people who told me there was nothing wrong with my son (and pointing the finger at me as being neurotic, bad parents, etc). Since my son was around 12 months old, it was obvious to me that something wasn't right. My GP and health visitor seemed to think I was neurotic and I was constantly being told 'oh just the terrible two's!'. That damn well doesn't last from the age of 1 to 4!!! Have to say, it took a lot of nasty letters and a lot of pestering to even get a referral. When we got a referral for my son at the age of 3 I hit another brick wall ? Paed said there was nothing wrong with him. The staff at Robert's first nursery were awful. He was left to do his own thing and they refused point blank to discuss my concerns about his behaviour. Enough was enough, I went in the following day and announced that that was his last day ? and I told them why! I got Robert into another nursery and couldn't believe the difference. Staff were amazing and I was fortunate that the nursery manager really cares. She phoned me one morning to say that she thought about Robert all the time and that she knew there was something wrong, but didn't know what. Within 3 days of him starting at the nursery, the manager had called in an educational psychologist and was really proactive in seeking advice and support from specialists. In addition, being a stubborn female that I am and wanting to do the best for my son, I did all sorts to get things moving. I kept a diary over 8 months and photocopied it and sent it to specialists in advance of appointments. It detailed his birthday when I hired a fire engine and he was very anxious and wouldn't even play with the hoses. On his birthday and christmas day, he hid wrapped presents behind the dining room table and refused to open them. Things like self-harming were/are a daily occurrence including attempting to run out in front of cars, etc. I believe that this was what got me heard ? there was so many things that happened that just aren't normal. In addition, I contacted other local parents and discovered that the same consultant's name kept cropping up again and again as being fantastic. To my despair she was off on long term sick leave. However, I kept phoning her secretary every few weeks and hey presto, one day was told she was back. Snag was I was also told she wasn't seeing children in her clinic. I literally begged her secretary to arrange an appointment without my son initially. She got the consultant to phone me and she was the first person that really listened. She arranged to do an ADOS assessment a few days later and 10 days after that finally I had it confirmed that Robert has AS or HFA.

 

Hope this helps in some way.

 

Caroline.

[jen]

How can this be down to budetary. The quicker a diagnosis is made the less appointments a child has to attend to find the diagnosis. The NHS, education and DLA are all different budgets so that would not come in to it.

 

Ask a consultant how much it costs for a first or continuing appointment he would not be able to tell you so money does not come into it.

 

The consultant does need evidence from different bodies of people who work with the child. The majority of the diagnosis is made from evidence presented from the childs development, other people who see the child, the parents concerns and from observation. If you have a parent stating there is a problem and a nursery saying there isn't than this will delay the diagnosis.

 

A lot of health visitors or GP would not be able to identify ASD because of the varying difficulties these children present.

 

We were seen by the consultant six times over a period of eight months and than it was two consultants who made the diagnosis of our son when he was five years old.

 

Jen

 

 

Jen

Edited August 11, 2006 by jen

[summertime]

All i can say is I have been to more than one multi agency meeting where parents, school and health visitors describe social difficulties, communication problems and problems with behaviour be it due to sensory issues or obsessional behaviour. In conclusion the paed has decided to look at the child again in another 6 months in the hopes that they will 'growout of it'

 

ineviatbly the diagnosis is eventually given

 

maybe we need more proactive health 'experts' in our area

[jen]

The majority of children are older than five years when diagnosed hence the health visitors are not aware they are diagnosed. If health visitors do not have the experience of working with children who are definately ASD than they only know what they read in literature. Within the literature they read there would not be a great deal written on ASD. How this problem will be overcome I do not know.

 

Within health care it is always a waiting game. If it is a short term problem than the majority of occasions it will go way by reviewing it at a later date. If it is a serious problem than it will still be present when the child is reviewed later.

 

A lot of parents do at some time in their childs life have difficulties with their child and their parenting skills. Raising a child is one of the most difficult things to do. Yet we do not have any training for one of the most important jobs in the world, no wonder we make mistakes.

 

Jen

Edited August 11, 2006 by jen

[summertime]

hopefully the CHAT test now done as standard will not only help with early intervention but also raise awareness

[cmuir]

Hi Jen

 

Budgets definitely do come into it! What you've said makes perfect sense to us parents, but in the real world that's not how it works. Time and time again, I've had to battle and have been bluntly told that budgets do come into it. I found that the louder and longer I shouted, I got. If I'd kept quiet, I've no doubt I wouldn't have a diagnosis for my son or a learning assistant for him when he starts school next week. As I said, the minute you get a diagnosis, then services suddenly become available ie OT, learning assistant, special school placements, DLA, etc ? all of which costs money! Fact is, there are many decent specialists and other professionals out there, but their hands are tied because they also have budgets to manage.

 

Money is only part of it and as we've both said, it also comes down to development and it takes time often months (even years) to have specialists each with their own areas of expertise to assess within a home setting and within nursery/school.

 

Caroline.

[purplegail]

When my daughter was in nursery I knew that something was wrong and the behaviour that was described to me by her teachers, I now know to be 'classic' signs of ASD. Back then I knew nothing but took my daughter to the GP on many occasions. She was finally diagnosed aged 11!!!!!

 

At this age, a child has to cope with puberty, spots and changing schools which is hard enough for any teenager. For my ASD daughter, coming to terms with being labelled 'different' pushed her firmly over the edge. I will never know for sure but I strongly feel that parents concern should be taken more seriously so that diagnosis can be made at an age where the child grows up with it. Maybe less of us will spend years being made to feel like 'failing' parents.

 

When diagnosis is made later in the childs life, the help available seems to be very limited as most courses seem to be aimed at early years.

 

Gail

[aro]

The CHAT test is done at about 18months here, my dd didn't really show anything (that wasn't explained by her other conditions) at that time.

 

As for dx, our pead doesn't believe in dx neuro conditions definately till 4 as brain is evolving. But she has been suggesting AS since about 2.5 based on dd's speech aquisition, echolilia etc.

 

A Neuro saw her with our pead at 3.5 and has written dx of probable ASD.

 

But we have to wait for the formal assessment panel which has a long waiting list, (though it's just our pead and an EP!)

 

Anna x

[jen]

maybe an aim for the National Autistic Society should be for them to promote early awareness of ASD symptoms with the medical, nursery and education areas.

 

Jen

[summertime]

thats their latest project jen and the main reason i'm fundraising for them

[lisa]

Our story with our eldest is similar to Gail. We knew something was different from an early age, he was referred to a SEN nursery and went there every afternoon from the age of 2 until he started school. He was 9 and a half before he was finally diagnosed. He displayed such obvious and classic signs of AS it still amazes me to this day why no one recognised it earlier. Delayed speech followed by echolilia, not looking at you, obsessive, one track, lining things up, short attention span, hyper, no social skills, major meltdowns and not appearing to understand what's being said to him DUH!!! When you know the signs it just screams ASD but somehow he still managed to slip through the system.

 

Lisa

[CarerQuie]

Where we live an Aspergers diagnosis is not confirmed until a child is 7.xx

[UltraMum]

Where we live an Aspergers diagnosis is not confirmed until a child is 7.xx

 

Our consultant doesn't diagnose AS until 14 due to brain development - but will diagnose ASD before then

[LizC]

Hi the earlier the better for a dianosis although this isn't always the case and deosn't always present in children earlier. for Matthew we knew there was something from the word go and I guess me having alot of knowledge of aspergers (my grandad, mums best friends son and also my friends son has it) led us to getting Matthew diagnosed earlier. he has symptoms of 2 pages long (HVs were rubbish imo) I took him to the GP at 4 1/2 who referred him and he was diagnosed shortly after his 5th birthday. my grandad was never officially dianosed and the 2 boys I know were diagnosed around 12, both had loads of problems throuh school)

[Stephanie]

My son was assessed at 3y 11m, then diagnosed with HFA about 6 months later.

 

I wonder if that diagnosis is conclusive ... what does it mean? Does it mean Autism in general or Aspergers? He seems to fit into both in some ways, and also I think he has hyperlexia .. which by all accounts doesn't even exist in the UK.

 

So even with a diagnosis, the battle continues ... I think he will maybe go on to be diagnosed with Aspergers in later life ... but when? and by whom? ... our child assessment service are for the under 5's so I don't know who would assess a child over the age of 5.

 

Also I was scared by that line "they get worse as they get older" .... it worried me as my son is doing so well, he seems to taking steps forward all the time.

[Suze]

My son had a few developmental delays, failure to thrive, obsessional behaviours at pre school age.As he grew older he changed and got worse and was harder to manage.School played a particular role in this, at 6 he was dx dyslexic, at 7 dyspraxic and Aspergers /ASC , with auditory processing and visual problems.

[big mamma]

My health visitor noted my concerns at the 2 year check-up and asked an early intervention worker to come and visit with us. She asked me if I thought there was anything different about my daughter and I blurted out that I was worried she had autism ( I had never voiced this out loud to anyone else prior to her visit )

 

She agreed that there were a lot of behaviours going on which indicated autism and asked me if I wanted a referral to the local Child Centre or wanted to 'wait a bit'. I was totally terrified at the time and said I thought she was too young for any tests. Within 3 days I had recovered my composure and 'phoned her back to ask for a referral. Once the ball started rolling she had received a diagnosis of ASD within 6 months - she is high functioning and verbal but they don't want to pin it down as Aspergers until she's older.

 

It's only on seeing other parents problems with obtaining a diagnosis that I realise how lucky we have been - knowledge is power right enough.

[gladysmay]

I feel there is a mix of things preventing earlier diagnosis, lack of knowledge on the part of health visitiors etc that come into contact with the younger child, the same for GP's and then even if you find someone who agrees with you they are bound by a system that has no money or resources. I knew my son was 'different' from newborn but he was diangosed at - 18!

 

I had to pay a Consultant after years of being accused of being a bad parent, and sent to therapy etc, of course the years of raising a child undiagnosed took its toll on the family and my health anyway - my point is, if you think there is something about your child that they have missed then go for it, and keep on nagging till you get it sorted. best wishes.