What does a dx of MILD ASD really mean? Anyone with the same dx?

[mysonben]

I'm getting confused with what is meant by "mild" ASD which is the verbal dx we got for my ds (3y7m) ; What does it mean really? My understanding of his mild ASD : he is verbal (although big delay) and he can socialise ok with adults (not so good with kids still but he is trying but is awkward with social skills), he has some pretend/imaginative play although limited and can be quite repetitive, he doesn't have many rituels and obsessions and shows some flexibility, and minor behaviours and sensory issues.

Is a DX of mild ASD the same as HFA ? but my ds has no talent!

From what i can make sense of all the differents variations of the spectrum is that personnally if i had to make a dx of my ds as a parent, i'd say he has mild PDD-NOS. Mild because the symptoms/signs he is showing are not severe( apart from his speech and receptive language) and he just doesn't tick all the boxes for classic autism or aspergers.
Do you think my perception of mild asd is correct? How do you perceive your dc mild asd dx?
Thanks ladies.

Hi mysonben, my DS is sort of on the other side of the fence from yours in that he has many autistic 'traits' but not enough for a diagnosis, and to be honest, a diagnosis would probably have helped us get support even if it was on the 'mild' side.

Technicially I'm not sure I can help you. I know different docs seem to use the classifications in different ways. I don't think HFA kids neccessarily have a talent for example.

In fact i think that mild asd is a term which is quite vague. Would a formal dx give us a more precise name ...HFA, AS , PDD-NOS (the more likely in my eyes) ?

Shells- I see what you are saying about your ds being possibly borderline with autistic traits.

My ds 'dx was only a verbal one followeed by a report mentioning ASD. We have not talked /decided anything yet as to whether ds will need to have a formal autistic assessment, we are to review this in the autumn with the paed.
So a verbal dx of mild asd could be all we might ever get since ds already has SALT and senco support.

Or maybe when/if you get a written assessment they will change it to HFA of one of the others. (probably not AS if he has poor verbal skills -my DS does too).

I think my DS fits the PDD NOS category too, but it doesn't really seem to be used much anymore.

I don't know the system well enough as not in the UK but when he's at school age then he'll probably have his support needs reassessed and its good to have as much stuff on paper as possible.

Its a minefield isn't it. Loads more specialists on ASD than me on this board. Hope you are ok and not worrying too much.

Hi Mysonben, not sure if I can help you with the diagnosis and we went through the assessment process a few years ago and I've forgotten a lot of the jargon. My son is 9 now and we go to see the paedetrician once or twice a year, I'm not sure why, really. He could (probably) be called mild ASD if you wanted to put him somewhere, although the experts have said that he has some of the traits but doesn't tick enough boxes for a full diagnosis (of mild ASD). When you think about it, a lot of people could fit somewhere on the AS, if you choose to stretch it far enough, so saying a 3-year old child has 'mild ASD' is pretty meaningless I think. I must say that I have come to the conclusion that mild ASD is just another way of saying 'your child is a bit odd'. I'd rather they said that, frankly. I get the impression from schools and SENCos etc, that as soon as a child is a bit different, the ASD boxes are being ticked- what I mean is that ASD seems to be a catch-all label for many different types of children.

My advice would be to enjoy bringing up your son, and ignore the attempts to categorise him.

I dont think it really matters.
What it means is y
our son is on the autistic spectrum. Things seem to be changing and it seems to be that people are realising the spectrum is a huge one BUT that regardless of where the child is on the spectrum it all means they have autism and as such means needs help in specific areas.
My DS has a DX of Atypical Autism and ODD. All that the school needed was the AUtism word and my son got the help he had needed for over 3 years. Without that Autistic label he got nothing!

I would agree with Merle...and interestingly so would my sister, who is a primary school teacher. There is an awful lot of do-they-tick-the-boxes attitude in early years and primary teaching these days - not helped by all the SATS type assessments etc - and it does seem in some cases as if when children don't fit into that perfect 'model' and display some quirks or differences, it's all too easy to label 'mild ASD'.

We are in a similar position to you mysonben - verbal DX that quite frankly seemed a bit woolly but nothing on paper yet. And until a formal assessment for autism has been completed we are essentially in limbo land.

As Bonkerz says the spectrum is a huge one, and with the label it is easier to get whatever help your DS might need....BUT my concern remains that if the diagnosis is not actually accurate (you don't seem convinced that yours is and neither am I with ours, to be honest) this could lead to future teachers having certain expectations of an 'autistic' child's behaviour and potential. They could therefore end up implementing strategies etc that are actually inappropriate and therefore damaging to the child.

Of course I'd love to think that all teachers would be very aware that autism is a huge spectrum and that they should treat each child as an individual who can achieve their individual potential and should not be stigmatised...call me cynical though but I doubt that would be the case

I think merle's advice is brilliant - try and enjoy your child and ignore the 'experts' for now. I am going to try and take that advice myself! I can't honestly say I've actually enjoyed a moment with DS since our verbal DX was announced. I've been too stressed, paranoid and miserable. Which is doing my poor child no good at all

'Mild' is a word I hate. My DS has ASD, he is high-functioning and relates very well with adults, much as you describe. So you may describe his ASD as mild in some circumstances. However, if he is not managed appropriately, so that he feels calm and in control he can present as anything but mild and retreats into a world of high anxiety and withdrawal.

Before he started school my DS had no rituals and showed flexibility. he was a happy, easy-going child. When he started school this changed completely, as his world was opened up and challeneged in ways it never was when he was home with mummy. Suddenly he ticked all the boxes, and he spiralled out of control. At this point his ASD would never be described as mild, and we did not anticipate that this was going to happen. I am not trying to worry you - I just want to demonstrate that 'mild' is not a useful term.
What i am trying to say is ASD is a broad spectrum, and your DS's traits will change over time. A description that may fit now will inevitably change and be inappropriate at another time. You are unlikely to get a firm diagnosis that says anything more than ASD.

Focus on your DS, and not his diagnosis. He is young, and hopefully with a recognition of his potential difficulties that an ASD label provides, he will adapt well.

As a last thought at the moment my DS is back to his brilliant best - happy, engaged and very funny , if a little quirky, thanks to a very supportive school. Nothing is set in stone

Thank you for your replies.

Amberflower- i can join you on the emotional rollercoaster since the words ASD came out from the paed 's mouth , seing the report was worse!

But i've made progress in 8 weeks and i try my best to look at my ds in the way i did before the dx. Time will help i suppose.

Merle - i appreciate and understand your viwes on the subject of early years, asd catch all label if a child is a bit odd.

But i went to the paed for answers primarily because my ds'development in the areas of communication/understanding, social skills, and restricted insterests/limited imagination at play, were starting to worry me a lot, i needed some answers in order to understand/help him better. in all fairness yes my ds' symptoms/behaviours are mild compared to some of the difficulties some other children have (i'm well aware of this when i read some posts here on MN ) but these mild difficulties are still causing some problems that i can't ignore because if i do then my ds will not be getting the help he needs. My ds' asd may be mild but his receptive language /understanding of the world presents a huge delay, he has no idea when it comes to anything abstract , no idea about 'santa' , no understanding of time, little idea about emotions other than happy or sad, ...he understands only things that are literal , with visible evidence.
These specific difficulties are not what i would class as 'odd' but are a real problem , an impairement he has that needs to be addressed even if it gives him a label in the end.

Widemouthfrog- Thank you for uor reply.
DS 'starting school is a big thorn in my shin and i do think about it with a tad of worry. He is due to start reception in sep 2010. When outside the home , he does tend to show more anxiety , when faced with a situation he has no control over or a situation that worries him , he does become withdrawn ,or will come out in a flow of tears over nothing , a nothing that another child with no asd would simply take in his stride.
I've lost count of the amount of times my ds' attitude puzzled us , "why is he doing this over something petty?" , my dh used to say "stop being so stupid! what's the matter with you!" , now we know why.

Just to put your mind at ease - we did not know our DS was ASD when he started school. hence it was such a shock to him and us. You are in a much better position to plan. I was just illustrating a point that even at the more able end of the spectrum there can be periods of real difficulty that the word 'mild' can deflect from.

hiya - i feel like this thead is for me also. My dx was slap bang in the middle, whereas I cant help but feel it is pretty 'mild'. Both dh and i grapple with this. (we are in a daze at the moment)

but ive got a lot from these few posts - namely- what does it actually matter where he sits?!? (it doesnt). he is what he is - a little legend.

THAT being said, its impossble not to worry. I feel like this is all I will ever think about for the next ten years,

i too obsess over everything he does and feel it is affecting my time with him. Does this end with time? i hope so. i think i worry becuase he so young to be dx'd (2.5) and whilst he is absolutely ticking a few boxes now, im worried it will be more in the future. guess that is the crux of it.

absolutely no expert but my doctor seemed to suggest that HFA diagnosis was made when speech as not an issue?

thanks widemouthfrog. what you say is really reassuring. it doesn't actually matter where they are on the spectrum, does it.

Hi mysonben,
There are some very strongly held views on diagnosis on MN but IMHO if a diagnosis helps you get the help you need for your DS then use it to your best advantage.

I also had a very confusing DX for DS1 in feb. I was told he has a social communication disorder, is on the AS but at the very able end, whatever that is supposed to mean!!!

I also know that sinking gut wrenching feeling when they first say yes it is an ASD. But in the end it means DS is getting help at school at, as you say, we now have an explanation for some of his more bizarre behaviour. Oh and we also get the inappropriate responses to seemingly minor incidents/occurrances, tears, tantrems, screaming ab-dabs etc. It can be very upsetting/embarrassing in the middle of Tescos!

As far as school is concerned, you mentioned a Senco, is he at a pre-school now?

BR

Sorry xed posts mum2fred - I was told HFA is when they are speech/learning delays and Aspergers is where there are none. But I believe they are going to reclassify everything soon to make things clearer.

BR

Sorry haven't read all of the thread.
It sounds to me that you could have just been given a temporary label to give you some idea where you might be heading tbh ...in preparation for his assessment. I was also given a very loose verbal idea of what ds might have (they called it mild aspergers or hfa)when i first went to cahms before he was given his proper assessment using the ados test.His dx is aspergers/hfa with dypraxia btw.

KNOWLEDGE IS POWER, even if that knowledge comes in the form of a dx

Thank you ladies. I too think mild asd is simply a temporary label to let us know what/where the problem is. And it did help because it has made such a difference with my understanding of my ds'difficulties, and made a huge difference to my level of patience with him .

MYSONBEN, i think maybe you should check something out called "Specific Language Impairment", from the few details written, it sounds like he could have this too. Obviously im in no way trained or medically educated, but from what you say he does seem to have lots of the same difficulties that many children on here have with SLI, my child (DS4, 4.1y)included. TClangers son has it too (and she has an excellent blogspot shes more than happy to share). Both of our children also exhibit very many ASD traits, but are only considered to be 'mild' ASD too. HTH XXX

incicdentally totally agree on the patience thing, when you know WHY somebody is doing something it certainly makes it 'easier' ('easier' only being a relative term!) to accept and live with.

Grrr the term mild asd really gets to me too. My dd has AS and this is the box they tick on her statement. How can something that affects my child 24/7 be classed as mild

MysonBen,

The label "ASD" has already done the best job any label can do for you. It's helped you understand your son and it will open doors to him receiving other help. These other labels do not have the further answers about him that you seek - they are all used in different ways by different people.

What you can do is work on better understanding his underlying his sensory and processing problems so you can improve your therapeutic efforts still further.