ASD ?? Confused

[rugrats3]

Hi
My DS is 3 years old
Since age 2 he has had speech and languageg therapy( They suggested that he was asd?)
He has been seen by 2 differant paed and they both think ASD
He is now having portage. Had a frank chat with portage worker today and asked her opinion and she said from what she has observed over the 3 visits she doesnt think that he is asd.
She suggested maybe Fragile X, Adhd< or Dyspraxia ?/ or maybe anxiety
Really confused now
Reasons that he is not ASD he sits up to play some of the time, He can make little eye contact, He speaks (not always clearly)
he is socialable.
Feel like i am going in circles,very confused and feel very alone

Sorry meant to add, any advice would be gratefully received x

I don't think any of those reasons would rules out ASD. Autism is a spectrum disorder and each child is on different places on the spectrum in terms of different skills. Nobody can say that a child does xxx therefore does not have ASD.

Have you heard of the ASDFriendly forum? It may be worth a Google because lots of parents post on there about their ASD children and you might pick up some information which clears things up for you a bit.

It sounds to me as though your portage worker doesn't have a clue about ASD.

Sitting up to play has nothing at all to do with the criteria for ASD.

Eye contact can also vary from child to child. Some will have none at all. Some will have too much, in the sense that they over-do it and stare. Others will be anywhere inbetween the two extremes.

Both of my boys with ASD can speak.

My younger ds with ASD has always been fairly sociable in his own way. The issue is more one of being able to read social cues and knowing what to do or what not to do in social situations.

I would pay far more attention to what the Paeds have said than to your portage worker. She doesn't have the necessary knowledge and experience to make any kind of diagnosis, and IMHO she is irresponsible to even be attempting to.

Thank you for the quick responses
He is also seeing a education woman who is working with the school so that when ds goes to school it will all be ok?
He has been referred to a education psycologist?
Apparently he is on the waiting list for a meeting with all the specialists to decide after they have all observed him?
Sorry for all the question marks but very confused and dont know what to believe or think tried looking up fragile X but get more confused

hi, fragile x can be diagnosed by a simple blood test so if you ask your pead for one it will be clear if that is the problem. Good luck.

In some areas they routinely do a blood test for Fragile X. In other areas they don't bother unless the child has some of the physical markers. Again, if the only reason you are thinking of Fragile X is because of the portage worker I really wouldn't worry about it.

It's good that your ds is on the relevant waiting lists and is going to be seeing the Ed Psych.

I am going to ask his other Paed for a fragile x test.
What does the ed psch do?
I was just getting my head round asd.
He will be sociable to people he knows
she also said that if DS was asd then he wouldnt interact with his siblings?
He cannot cope with just going out,change of routine (went on holiday,he slept for 2 days) when he cant cope he seems to completely shut down.
because when he goes to hospital he lets them do whatever they want to him is another reason not asd as asd children cant bear to be touched,
sorry for rambling just dont know where to turn

That bit about the hospital is rubbish. My DD1 has AS and became dangerously ill when she had appendicitis at 6 because she was totally passive and they didn't believe she was in pain.

She is currently playing with her little sister so that one is out of the window too.

This lady sounds a little dangerous. She shouldn't be making sweeping statements like this. She could cause some big problems.

I'd love to know where the portage worker is getting these odd ideas from!

My two with ASD interact well with each other and also with their little sister. They are very close and generally get on very well.

Both have been in hospital for short stays and have been fine with being prodded, wearing masks (asthma) and having injections.

My elder ds used to shut down when things got too much. When he was a couple of days old he went into complete shutdown and ended up being tube-fed because he wouldn't wake up for more than a couple of minutes at a time. As he got older he would just lie down on the floor somewhere and stay there if he felt overloaded.

Hopefully the Ed Psych will be helping to look at what needs your ds might have when he starts school and help to get things set up. How good they are will vary a great deal. Some are very good while others can be hopeless.

Thank you for all your quick responses
The pain issue with my DS is a big thing as he doesnt tell me when he is ill,just carries on (if that makes sense)
he has also had blood tests with no fuss at all,various scans,xrays,he had a throat infection last week the only reason I realised was cause he kept drooling and not swallowing his saliva when I looked at his throat it was so inflammed (he suffers excessive sweating which we think is related to anxiety)

It's your portage worker saying all this? frankly I'd make a complaint, she's talking complete crap.

(ours said ds had PMLD until he'd had 2 months of ABA then all of a sudden he was 'too bright' to need portage - again complete crap - my opinion of them is slightly jaded)

I am going to speak to his education woman tomorrow and see what she thinks
She is the person that attends meetings then relays it all back to me (does that make sense)
sorry to sound naive but what is PMLD?

sorry - profound & multiple learning disorders - something that portage worker isn't qualified to assess or really even comment on

hi, my ds (4, asd) has good eye contact, and loves to be touched, and he is sociable (albeit mainly with adults or older kids)

he also seems to have a high pain threshold. we think this is related to his sense of touch. we think he is hypo sensitive to touch, which means he likes firm pressure. this is also linked to his pain threshold.

it is so difficult when you are trying to find out. before i got my sons diagnosis i read a good and easy to understand book by dr lorna wing, called something like "autistic spectrum disorders".

by about the 2nd chapter i said to my husband, "OMG, of COURSE he's got autism" !

anyway, good luck.

It is odd to me how different areas of the country diagnose so differently. I have been told my ds isn't ASD because he gives eye contact and in play he mimics 2 boys (doesn't interact with staff or any other children though).

I would love to know if they all use the same methods for diagnosis.

pucca, i'm sure there are various diagnostic tools available.

i'm pretty sure there is no uniformity.

there's ADOS, and CHAS (sometimes used by H.V.'s ). (if you ever see one...) (although we tend to avoid ours so i suppose that doesnt help)