unsure of diagnosis

[Cathwyn]

Hello, This is my first post although I have been looking on the site for a while..I was just hoping someone had some advice for us please..

My son is now 3.5 years old, he doesnt talk although he does babble a lot and sounds like he is conversing in a foreign language. My mum is convinced that he does say a few words occasionally.

He was coming along as per text book till he was about 18-20 months. He had tonsilitis, stayed in hospital and had to have blood tests (had to be held down). Since then we havent heard much from him.

We have seen the Paediatrician twice, he is sitting on the fence as says Liam has one or two traits which could mean autism, but then others that show he isnt ie cuddling, kissing, smiling., interaction. He does sometimes line up things but other times doesnt care where things are. He will interact with other children but also happy on own. Eye contact varies. When other mums come with their babies he will jump around in front of them and try and touch the baby. He has also seen audiologist - hearing is fine. ENT say tonsils large but cant do anything unless there is a problem with recurrent infections..

He did have some sessions with the speech therapists but since seeing Ed Psych is in an assessment unit so is only seeing SALT once a month through the unit. The unit (where he has been since end of February) say they wont be able to diagnose till December time earliest.

We now feel in limbo..we think we need to do more to help Liam. Any advice please? We are also very interested in biomedical treatments..should we try these before official diagnosis? How do we go about this and who do we ask to treat him? Could it be something other than Autism?

We have so many unanswered questions and feel very alone at the minute..

Thank you so much for reading, hope you can advise..x x x

Do not have much help but me son is 4, has no speech but it very noisy, he is loving, does not seem to have sensory issues (if anything hypo likes things noisy, strong flavours and smells), likes routines but does not have meltdowns and can cope with routine changes. Eye contact great with people he knows. My son was dx with autism when he was 3 and like you I was unsure as he did not fit. however since dx and groups i have been to i have found other children very similar to my son. It is good to remember the triad of impairment as although my son is not classic autism he does show all the problems of the triad.

sorry that should be my son. Also my son regressed at 18 months, when autism was first mentioned at 2 those who knew him could not believe it as he was very interactive before.

Thanks UTAH for replying, my son Liam sounds like yours but I think he may have sensory problems as he grabs your hand and rubs it to his face, sometimes putting a finger in his mouth and rubbing his gums? Has just started the habit which ive just read on this site of picking his nose!! which all kids do but maybe not to the extent he does? all the time and some nose bleeds? Has started to hide his face recently, but once he is in a room with people he is fine. Liam is also fine with routine changes and I dont think he has meltdowns? Now and then he will have hysterics when we want to do something, but this is quite rare? Ive always thought no worse than a usual 3.5 year old..

When my ds was around 3 he had very limited speech and liked routine etc. However he was loving and mixed well with older children, babies and adults, just not well with his peers. He was good at eye contact and has always been very loving with us.

All children show some ASD traits at the age of 3. My ds is now 6 and has a dx of ASD. It is a huge spectrum and every child is different. It is a lonely place for a parent, I remember, but there are plenty in your shoes, I was 3 years ago.

Not sure I can be of much help but I pushed for an assessment as early intervention with things like ASD is important.

Thank you bagpuss71. I am pushing, besides being in an assesment unit, we are due to go to the Paediatrician for the 4th? time next week. Sorry, Its just everything seems to be on stop now until the assessment unit says what they think is wrong with him? I think he needs to be referred to an occupational therapist at least..also would like someone on this website to advise us re biomedical intervention - where do we start? also ABA -how do we do this? Theres so much to do and no one seems to have answers for us...I have read about early intervention which is why I am trying so hard for Liam, but it seems to be more in the US for early intervention? Does your DS have speech now? Thanks so much for helping. x x

Cathwyn just a thought but has your son been tested for Fragile X or has anyone even mentioned this?

Typical signs are what you describe (although I know there are a zillion things out there) but when they're young they get ENT problems (seem to decrease normally with age) plus the way you described him touching the babies, wanting to be friendly but not sure how to go about it etc...
Maybe you could go onto the fragile x site (fragilex.org) and you'll see if you think he could be.
They can also advise you, re. getting tested etc, but it's just a blood test.
I'm surprised if they think autism that they haven't suggested it themselves.
Do let me know what you think. I might be barking up the wrong tree of course but you never know.

BTW it is the most common form of inherited learning disability ( but you wouldn't know cos doctors know sod all about it!)

I agree you don't want to wait till Dec.

It sounds like currently his main problem is his delayed speech. There have been loads of threads on here about improving speech. Could you start with working out what you can do at home to improve his speech?

It's not my area, but I think I remember everyone recommending 'more than words'?

my son also regressed from age 1 and a half, by the time he was 2 1/2 he was mute. It wa sheart breaking as heused toplay and cause alot with me, then it became difficult to get his attention andhe'd ignore most people or scream and it's gotten worse.
I was convince I'd traumatised himleaving him in daycare 3/4 days a week.

Now I know that nothing could have caused his Autism apart from genetics.

So if you're thinking that his operation traumatised him, then that was probably just a coincidence.

The only think you say that would make someone question it being Autism is that he plays with other children.

I will add Cathwyn that Fragile X and autism often get muddled up. Well more often than not autism is diagnosed and it turns out to be fragile X in some cases as some of the behaviours are very typical. My boys have FXS but also ASD because of the FXS (what I mean is they wouldn't have autistic traits if not for the FXS although of course both stand alone too)
Of course it might not be either!

Cathwyn - My ds is 6 now and in mainstream school with a statement (20hrs 1:1support.) He still has loads of issues with ASD, obsessions, routine, meltdowns etc but made so much progress too, things I never thought possible. At 3 he was really obsessive, no speech, very much a loner. Now he never stops talking (from the moment he opens his eyes until he finally falls asleep!) he has friends, has learned to swim and has just done a reading in the school assembly:) if your ds does have ASD, it is life long but it changes over time.

Incidentally my DS was seen twice by the Paediatrician and was discharged at the age of 4 saying it wasn't ASD and he was fine. It was only diagnosed when he started mainstream school at 5 that with the support of the school who have been very supportive, that it was finally diagnosed by another paeditrician.

Whilst you are waiting for your assessment, google ASD. Theres plenty about it and this might help you in the meantime even if it isn't ASD.

Thanks all for your replies.
Mumoftwolittlerugrats, It was the same with mine, from coming to talk to saying nothing..Its horrible and at the moment we are just crying all the time and just desperate for an answer..

unpa1dcar3r and IndigoBell-I will look into FragileX and ask the Paediatrician when we see him again on Monday. I'm determined to have more answers/further referrals or tests, whatevers needed, Its so hard sitting here and just wondering.
I have looked at a few books and some websites already and am doing a lot of what is suggested on there to try and help with the talking so maybe one day..I will try some of the biomedical stuff as well, I'm just trying to understand it all first!!

Thank you for letting me know how your ds is getting along bagpuss, I'm crossing my fingers that my little boy will get along just as well.

Thanks everyone and I'll let you know how he gets on. X X

Good Luck Cathwyn
I don't know what your paediatrician is like but you may need to be firm. Be prepared!