Diagnosis

[Nikki]

Hi everyone

 

as part of my course on asd's we have been looking at early diagnosis of asd's & if you think this is a good thing.

 

I wonder if anyone has time to spare me a quick thought or 2 on this?

 

I know you are all busy & I would never ask for any in depth or personal info but its good to get feedback from the people whom it affects most. I also know first hand how long it can take to get a diagnosis - it took us almost 2 years for our son.

 

from my view I think that its a good thing( we got it when S was 4) & that it can hopefully( !! ) lead on to getting more help when its really needed.

 

for anyone that had a diagnosis later on in life - do you think an earlier one would have helped you more / made a difference?

 

Thanks so much everyone

[bettybiscuit123]

My son got his DX last month after 13 months of assesments, I think this is good to get it early as my son is only 3 and a half and we have known there was 'something wrong' for a long time before the assesments started. Now we know what he has and he has a dx we can concentrate on getting the best possible help for him, and i think that the earlier you can start getting that help the more chances my son has got in making alot more progress than he would have had if he hadnt got the diagnosis (if you get what i am trying to say!!). Now he has a DX i have been trying to learn as much as i can about autism and different interventions etc.. Hope this is ok for you, if you need any other help on this feel free to pm me.

Edited January 29, 2006 by bettybiscuit123

[shintyboy]

I have pondered over this previously.I had a diagnosis of AS last year at age of 40.In some ways I wish that I had been diagnosed earlier in life,which I think might have made things easier,especially in school.On the other hand,I wonder if it might have been like a "weight around my neck".Even now,in certain circumstances I am more comfortable with people knowing about my diagnosis.Like at work for instance.I feel it is easier for me,for my workmates to know because they are very understanding[my boss especially.] On the other hand,I go through phases of total "autism overload" and wish that I had never heard of AS! I have a lot to think about at present,with my son currently going through diagnosis.I am trying to make things as easy as possible for him,and ponder over everything,having experienced most things he is going through.I know a lot of this probably doesn't make sense and apologise for my ramblings,but the old head isn't very clear at the moment!!

[kirstie]

Our son was dx at 4.5 and i am really glad he was.

He was very challenging and i found him so hard to cope with, mainly because i knew nothing about AS and how i could help him to help himself, IYKWIM . Also the interventions here are pre-school and if he had been 5 or 6 when diagnosed we would never of had the supports we got. We really turned a corner once the appropriate people were involved with Lewis, i learned a lot too.

[justamom]

Hi nikki,

 

My AS son was dx just over a year ago at the age of 10. I do believe that things would have been alot better for us if he was dx earlier, my main reasoning for this that once we received a dx my husband did a complete 360 and realised that our son was not just a naughty boy... We both have alot more patience now and understand of our son...

 

I have always know like alot of parents on this forum, that "something was wrong" but nobody would listen I was just a paranoid mom it helped to confirm that I was not mad and was not dx-ing K myself because I worked in a special needs school.

 

I did ask when K was dx why it had take so long to get a dx. I was told that it is perfectly normal for children to be dx at the age of 10 as this is the time when parents notice a distinct difference between their children and their peers.. (not sure how true that is).

[LizK]

In general yes I think so as long as it is the right diagnosis. ASD was first mooted for our son when he was 2.5yrs old but there were too many variables for it to be definitive and also we were getting help based upon his needs rather than any label. Over the next 18mths or so it became more apparent that his problems were more and more likely due to ASD and we got a formal diagnosis last November. The advantage of the diagnosis meant we could go on the NAS Earlybird programme and it will be helpful for when he starts school as the school can access help from Autistic Outreach. Obviously the wrong diagnosis given too early is harmful to the child but equally the right diagnosis three years too late is equally detrimental

 

Lx

[cmuir]

Hi

 

I feel certain, that an early diagnosis is best. When for example I take my son to our local shop for a pint of milk and a loaf of bread, some old dear or shop assistant usually try to engage my son in conversation which he simply can't handle. They shake their heads believing that he is simply a badly behaved little boy. People need to be made aware of ASDs and understand how it affects people, etc. It's only after a diagnosis that you can get the right help, etc.

 

I'm still battling to get one for my 4 year old son. I have been trying to get my health visitor and GP to believe that there was something wrong with my son since he was 15 months old. I was told that it was just the terrible two's and basically that because I work full-time that perhaps I was stressed and neurotic! I don't think anyone in their right mind would make up such a difficult situation and feel strongly that life is difficult enough coping on a day-to-day basis without fighting specialists to get a diagnosis. I've has to make numerous phonecalls and write several nasty letters to get referrals. Now that we're getting referrals, I feel like we're getting passed from pillar to post. Can't understand why specialists are so reluctant to label ? perhaps pound signs has something to do with it?

 

Caroline

[Kathryn]

Hi Nikki,

 

My daughter was diagnosed at 15. Yes, an ealier dx would have definitely been better. It would have saved me years of guilt over my inadequacy as a parent - what was I doing wrong that other parents weren't? Why was every milestone, every new experience such an effort? With hindsight I can see that I handled some situations completely wrongly. For example, because she appeared anxious, shy and aloof in social situations I sought every opportunity to make her mix with other children, taking her to toddler groups, parties etc. I thought it was because she was an only child that she was behaving like this and that she just needed more exposure to other children.

 

Whether a dx would have got her help earlier - I don't know. She was always quiet and well behaved in class and presented few problems as far as teachers were concerned. I think we would have been hard pressed to put together enough evidence when she was 4 or 5. Her problems were more obvious from the age of 7, and I will always bear a slight grudge against the psychologist who assessed her at 11 and missed it then. Things might have been so different if she had begun her secondary education with a dx in place. Then again, after reading about the educational struggles of others, maybe not .

 

Shintyboy - you make perfect sense to me. Your son is lucky to have you as a parent, but it must be tough watching him deal with the same things you went through. <'>

[researchboffin]

Hi everyone

 

as part of my course on asd's we have been looking at early diagnosis of asd's & if you think this is a good thing.

 

I wonder if anyone has time to spare me a quick thought or 2 on this?

 

I know you are all busy & I would never ask for any in depth or personal info but its good to get feedback from the people whom it affects most. I also know first hand how long it can take to get a diagnosis - it took us almost 2 years for our son.

 

from my view I think that its a good thing( we got it when S was 4) & that it can hopefully( !! ) lead on to getting more help when its really needed.

 

for anyone that had a diagnosis later on in life - do you think an earlier one would have helped you more / made a difference?

 

Thanks so much everyone

 

I actually think the diagnosis makes little difference in itself and can have either adverse or positive outcomes.

What really matters is what action flows from the dx and whether this is helpful or a hindrance.

In theory a dx ought to enable appropriate interventions.

But this is very hit and miss. There is little consistency of approach across the country and in some places the dx leaves you up a dead end or there follows an ongoing "battle" with ed or ss about provisions or there is a lack of will to support from the HA. Elsewhere there are some excellent efforts to improve service delivery and generally dx is both quicker and earlier as long as it is straightforward but it can also be a quagmire.

There are major issues with adult services or more accurately the lack of them so what I think everyone needs to do is keep pressing for better provision and eventually it may happen.

In Devon for example there are no proper adult services Health and SS cannot agree strategy, neither has apparently any resources although they have enough resources to tell you there are none.

 

However, I think that you must feel some relief at finding out what your son had and the time to dx was not excessive as it is in some instances.

I just hope you see it as a diversity and not a disorder and that your son is able to express his individuality and uniqueness and not be subject to "normalisation" strategies.

Stepson's education plan said "he must learn to understand the needs of others" no reference to the needs of others to understand his needs though.

[oracle]

I have to agree with Kathryn. My eldest son got his dx aged 13, which I know is not that late, but following a total breakdown, which I believe could have been avoided had we know sooner. It was not for the want of trying.

 

My youngest got his dx aged 3 and what that has enabled us to do is to teach him about himself from a very early age. I suppose that we wont really know the answer to the question about an early dx being best until he is older.

 

But one thing I am sure of is that I often live a life of 'If Only's' where David is concerned and I will never know for sure. But with Matthew I will always know that we did what we thought was best from the moment we found out that he did have an ASD. The best is all any of us can do - even when it's not enough.

 

Carole

[jb1964]

Hi Nikki,

 

My daughter was diagnosed at 15. Yes, an ealier dx would have definitely been better. It would have saved me years of guilt over my inadequacy as a parent - what was I doing wrong that other parents weren't? Why was every milestone, every new experience such an effort? With hindsight I can see that I handled some situations completely wrongly. For example, because she appeared anxious, shy and aloof in social situations I sought every opportunity to make her mix with other children, taking her to toddler groups, parties etc. I thought it was because she was an only child that she was behaving like this and that she just needed more exposure to other children.

 

Exactly how we feel. My daughter was diagnosed at 12yrs after being referred by her Paed. to a Psych. team because he thought she was suffering from anorexia.

 

I have family who choose not to 'mix' with us because they have always thought she's a badly behaved child. After the age of around 7/8yrs even my parents started to dislike her - thankfully since the diagnosis they are much more understanding (although my parents and the school are the only people we've told).

 

For school - I'm sure if we'd know it would have helped - although she was passive at school and exploding when she got home - there were things that did cause problems like: certain teachers/bullying/PE/and any change of routine - (I'd like to think so!!! anyway).

 

For my daughter - to be told at an age when her whole way of life (changing to Comprehensive) and body has changed so much in the past 18mths has been a nightmare. If we had known prior to that she could have been primed more for what was about to happen to her, instead things escalated to a swallowing problem which developed to a point where her weight was critical.

 

Throughout her life I would say there has been three periods where it has been particularly awful (not just the general day to day experiences!!!) - the depressions that get so bad they're almost suicidal with grief over their lives - I'm sure this would have been easier (? if that's the right word) if we had known what the problem was and she'd had the relevant help.

 

As for being a parent I don't know which is worse - being told when they're 2/3yrs or when they're older - you can only experience it for the time you are told - although there are loads of things I would have done earlier if I'd known - like routine, sticking to rules, clear precise speaking etc.

Edited January 30, 2006 by jb1964

[UltraMum]

The earlier the better - due to J's late diagnosis at 6 and a half it has taken us until his 9th birthday to get any help in place for social skills etc - and now he sees this as babyish work and won't co-operate

[sharron]

my son was diagnosed when he was 3 with asd, which meant he started special school when he was 3 and a half, which l think has helped him come on he is now 9.

[clintess]

my ds clearly had problems from the age of two and he only was dx last week,he is seven this year.i do belive if he had an early dx we would of coped better and had an earlier understanding as well as sorting his education problems at school alot sooner.

[KarenT]

We're still trying to get a dx, but I'm pretty sure that I'd have coped better over the years if I'd known what was at the root of his problems. I know I've done things wrong in the past and that would have been avoided with accurate information.

 

Karen

x

[baileyj]

Max was first thought ASD at 2.5 in playgroup, we got DX when he was 3. This opened doors to us for alot of help and interventions, the Preschool-learning Alliance helped us get a playgroup, then when he started Nursery at 4, he went in with 1:1 immediately through the Early Years panel, and started mainstream reception last September statemented with 27 hours of 1:1.

 

If it hadn't happened I know Max would not have made the progress he has, and be the little boy he is today, so I say definately yes early DX is good.

 

I know its a postcode lottery though, we are Worcestershire and they are very good, neighbouring counties I have heard some horror stories.

 

Jo

[lynyona]

In my own personal opinion i truly believe that if kieran had been dx sooner he would be a lot different today.He wasnt dx until a month before his 18th birthday he is 20 in may.in our area te adult services are few and far between an we do not get any support for him from anywhere or anybody.And i believe that when he was younger he overall behaviour may have been able to have been turned around,or maybe it wouldnt we will never know but from all the postings i have read on various forums it seems that the general overall opinion is that the earlier dx the better the services are.But as with everything i still think it depends wherabouts you live to which services are available.

 

lynn

[darky]

we struggled with the decision as to whether we sought a dx for our son or not. hes nine now. we took the decision to get him asessed last yr and im glad we did in all honesty. finding out the extent of his difficulties was hard to cope with because basicaly he had coped quite well under the circumstances. he suffers from a huge amount of anxiety and i often torture myself wondering what school life was like before not understanding him and him having to learn coping stratergies for himself.

im glad that very soon he will get his dx and he will now grow up knowing and understanding why his views may be different to others. with his dx he will be able to access help when he needs it and hopefully instead of being told off he will be helped.

my daughter was dx at 5yrs old, getting the dx for her early ment that she has not lost valuble time at school her dx will become matter of fact to her im hoping, it wont feel strange to her and she wont have to spend time adjusting later on and making sense of why shes different.

[jb1964]

In my own personal opinion i truly believe that if kieran had been dx sooner he would be a lot different today.He wasnt dx until a month before his 18th birthday he is 20 in may.in our area te adult services are few and far between an we do not get any support for him from anywhere or anybody.And i believe that when he was younger he overall behaviour may have been able to have been turned around,or maybe it wouldnt we will never know but from all the postings i have read on various forums it seems that the general overall opinion is that the earlier dx the better the services are.But as with everything i still think it depends wherabouts you live to which services are available.

 

lynn

 

Yes, we have the same thing where we live. In fact when she was attending the unit for assessment they took her in under the childrens unit because she 12 during the assessment and the childrens unit offer more support to both children and parents - whereas the adolescent unit for 12+ offers no support for parents. Although if they make a diagnosis there is no NHS service/support at all in this area no matter what age.

[Nikki]

Hi Everyone

 

I want to say a big thanks for all of you who have taken the time to give some feedback on this. Its amazing how many people feel quite strongly on this when you get started ( just like everything really!)

 

the side of it all that seems to suck is the resources - always comes down to the cash at the end of the day.

 

I am so pleased to say all the others on my course have the same feelings : that early is good :so help can then come along.

 

not one of them has mentioned this forum yet so if any of them need a big boost or morale then i know where to send them!!

 

onwards.. towards the glass of red & the ironing

thanks a million again

nikki

[Zemanski]

I think in addition to early diagnosis a full and clear assessment of needs and sensitivities should be part of the diagnositic process

 

Com had late diagnosis but worse, 4 years on we are still discovering secondary problems - recently prosopagnosia or face blindness - which would have changed the approach to meeting his needs in the first place

 

hidden comorbids need to be recognised too

 

Zemanski

[JenRose]

I was dx,d last year with AS and we should find out tomorrow if my son is on the spectrum.

 

I wish that i could have been dx,d earlier as it would have saved many years of heartache for me and for my family.

 

Since i have been dx,d its like the dark cloud hanging over me has disappeared.

 

To watch my son go through the same things that i did/felt is heartbreaking and i sincerely hope that he does get a dx tomorrow.

[CarerQuie]

I hope That you get answers tomorrow.Research seems to suggest that early dx is good because early intervention can help.xx

[Stephanie]

Yes, yes. yes!

 

My son was 3 years 10 months at assessment and diagnosed when he was 4 years 4 months. It was devastating, I was choked, gutted, crushed, and am still battling with it. I was so afraid to get him diagnosed (all me, me, me) but knew it was the best thing for him.

 

Early intervention meant he got a place in a small pre-school speech and language cluster which helped him immensely, it also meant that I knew exactly what was wrong with him and could cater to his needs more specifically. I educated myself properly to get some depth of understanding and I could throw all my thoughts of denial in the bin - he is autistic, get on with it, and get him some help!

 

The care and assistance he has received after his DX are the building blocks to his future, why put them on hold?

 

I am writing an article on this very subject for a magazine - highlighting the traits to look for in under 5's and the importance of early intervention.

 

My motto would be, "if in doubt, go and find out" .. it's devastating but it has to be done.

 

Good luck with your work.

[DaisyProudfoot]

Yes definitely. My son was dx'd last year aged 9 and we'd known for years that he had problems but just didn't know who to turn to. I feel if we'd known his problems earlier and how to deal with them he'd have had a very different first few years.

 

But what must come with the dx is support. There's no point in just being told "he has AS" then getting little or no support and having to go out and find it yourself. We'd found this a bit because we had been coping with my son's condition for so many years un-dx'd the medicals just seemed to assume we could keep on managing.

 

Thankfully all the support and advice here on this forum has made a big difference and we've moved on in leaps and bounds!

 

Daisy