Confused about informal diagnosis

[fanjoforthemammaries7850]

I have been told by community paed that DD (3.1) "definitely has autism".

She does have impairment in social interaction, repetitive behaviours and a deficit in language - "the triad".

Her speech and language is strange as it totally regressed from quite advanced to just slurred babbling at 2.8, and we don't know why, it was also late for an autistic regression, we were told. It is now improving slowly.

So, in those respects yes she does definitely appear to have ASD.

However several things cloud the issue for me. She has developmental delay which could be affecting her interaction and speech. And she is extremely sociable without interacting (she loves company and gets excited at the prospect of it) and is totally unphased by ANYTHING new and indeed enjoys anything life throws at her and welcomes it.

She also seeks my attention all the time now, even if she is not interacting with me and avoiding eye contact I cannot ignore her for a minute or she starts playing up and whinging.

Could it be this is a language delay with ASD traits? Or am I just confused by my notions of "classic" autism and do any of you have children diagnosed with ASD who sound like her?

She also doesn't appear to understand, but does if you speak right into her ear, although her hearing was tested as normal, so I am wondering about auditory processing disorder too.

She has also had an EEG which was normal but not totally conclusive as she did not go into deep sleep, so Landau-Kleffner syndrome is still a vague possibility.

Have been waiting forever to see specialist for formal diagnosis and finding that very stressful.

Any opinions would be gratefully received, I'm sorry, you must all be bored of hearing our story again, it's just the wait and uncertainty are driving me mad!

Thanks

The reason I am posting this is we went to a charity Xmas fair today which I found unbearably loud, chaotic and busy and she just LOVED, she was dancing with excitement when we went in, which surprised me.

its really hard to say as all children on the spectrum can be so different i know sociable children with ASD and i know unsociable children with ASD i guess there taking into account other behaviours that have been observed to make this dx

i hope you get all the help that is needed to help your dd but they do have so many boxes that need to be ticked before a dx can be given so im guessing they have seen few to even suggest

my ds is a seeker of attention will only hold eye contact when he is talking to you if you ask him something eyes revert away he is excited about families company but not company of lots of children , he didnt like loud music etc but loves it now and will happily dance and enjoy himself he was fine also with music until 3 then seemed to dislike it his 4.6 now and is back to loving it he used to do music therapy from age 2 and loved it

sorry im not very good with advise these days the bit that gets me is the language delay as ds had no language till nearly 3 but you say your dd did but regressed so its not classic speech delay as she had good speech iyswim ds never had good speech and also the eye contact im not equipped to dx but i would say there are factors that would appear she is on the spectrum if hearing tests etc all came back fine then its possible

Thanks..sometimes I am sure she is on the spectrum totally and quite severely, and sometimes I think its more like GDD with ASD traits, I could accept it now if she is on the spectrum, it's just not knowing that is stressful, especially with the severe speech regression, which is a worry, would love to get to the bottom of it (been in system since April).

Also, I agree, the community paed has only seen her two or three times and DD was not even acting like herself at that appointment, so I was surprised by her committing herself so much, tbh.

Also (sorry for the multiple posts) I have never heard of a child with ASD who doesnt have strong dislikes/issues and difficulties with coping with changes etc (DD is possiblt the most easy-going child I have ever met), but maybe I am just ignorant/ill-informed, I am willing to learn though.

well i hope you do get some answers it took us a yr of not knowing ds was dx at 3 it made me feel so ill so i fully understand how tough it is for you

is there any sn groups you could go to they have therapies and things you can do with her there to help in meantime

i think the main thing is the speech regression the delay was never there to begin with iykwim most children with gdd for eg never had the ability to begin with

but i dont want to go making my own dx i do feel for you it is hard but i have a different boy now since dx with all the help he has received his made huge progress

big hugs to you sorry again if im not much of a support im always tongue tied i know what i want to say it just dont always come out right lol x

ds had a phase of hating change but in all honesty he is quite easy going but he did have a phase though at one stage wanting to go one way to town etc his 4 now and id say for last nearly yr his accepted we went on holiday with no hassle etc we can go out without warning but again all children are different and display different traits

Thanks, you are lovely and your advice is very welcome.

I agree the regression is strange, it was also not accompanied by any regression in anything else (ie interaction - she became more sociable.

It was also quite physical - she was drooling MUCH more and falling over more when she stopped being able to speak, so I was of course worried about brain tumours etc (less so now it is improving). Have even thought it could have been severe glue ear. The autism specialist here said it wasn't typical of an autistic regression and was of concern (we are on waiting list but community paed spoke to her on phone.

I am already in system and she is getting OT and SALT etc, it's just i suppose I am impatient and would like to know exactly what is happening (plus am worried about the speech thing).

I suppose I need to learn patience. It's frustrating though, if I suddenly stopped being able to speak and was slurring and drooling I'd be whisked into hospital for a CT scan/MRI etc but this happened in August and still nothing except 1 inconclusive EEG.

that to me too would be worrying also as its not classic regression has ears been tested etc as to me i would think maybe hearing or something ear wise due to the imbalance and talking becoming less but then doesn't explain slurring,

it is just such a horrible place and i fully understand where you are and i'll also say keep on and on at them until you get what you need as i found we were left and left until i started kicking up fuss and making myself heard then things started happening so never be afraid to phone them every day for answers if you have to or go back to gp and ask for referrals expalin your worries about slurring lack of speech etc i would think that would warrant further investigation

so i would say keep on and on until your satisfied they are doing all they can you may feel uncomfortable but im glad i did it as i found i would ahve been waiting forever otherwise as i wasn't making myself heard they were forgetting me

Thanks. We have been told she is being "fast tracked" to the communication clinic (who deal with formal diagnoses here) but have been waiting weeks so obviously its not as fast as i thought. Will kick up fuss if we have to wait much longer.

Her hearing was tested and found to be OK. She has recently had to have antibiotics for an ear infection, and hadn't had signs of ear pain, just a cold and being sick, which she has had a lot, so maybe there is something up with her ears.

it could be worth looking into also just all options i guess

well i really hope you get some answers just keep on reminding them about you phone them monday and ask if any news on the refferral etc sometimes there intentions are good but you fall down the pile and need to keep on to bring yourself back to the top again

good luck im off to get some sleep i really do hope you get some concrete answers just take whatever routes you can i always went back to gp if had no answers and they would chase it for me lol we were seen as persistent and probably some what annoying but im glad we did as we got here quicker lol

Thanks for listening and glad your DS is doing so well.

thank you and im happy to listen were not without our worries but we have the right help now and his progressing but no progress was made until 3.6 and from there its all fallen into place over last yr before that i was sick with worry his speech didnt come along properly until 3.6 socialising only started from day he started school pre school had a job to get him with other children its just come along with age also

well good luck big hugs get some rest and ask lots of questions to them on monday and get yourself some answers if all else fails go back to gp and get some referrals made (((hugs))) x

hi fanjo hope you are well

"she is extremely sociable without
interacting"

my understanding from this board is that ASD doesn't in itself necessarily make you less sociable, it's the bad experiences you can have as a potentially sociable ASD person that make you less sociable. So if she does have ASD, you must be doing something very right .

What ASD affects more is your ability to Show/be Shown and to Tell/be Told (read body language, share attention, follow explanations, etc, etc)

DS2 (4.3) has only just mastered what the verbs "show" and "tell" are about and only just mastered the pointing-at-one-thing-looking-back-at-me thing. That's the most "autistic" thing about him I think - much more so than fussiness about clothes etc. But as you know, I don't find ASD a helpful label for him because his difficulties appear to be delay-based and he is outgrowing them.

Re the lack of fussiness: it may be that this might come later - have you noticed a pattern on this board of kids who are very laid back then, when they reach a certain developmental point, suddenly become quite fussy and anxious? It can happen at 3/4/5/6.

Your story does sound unusual (don't know if that's a consolation or not !). Did you have any devlopment concerns before the language use changed? Do you have any film clips you could show professionals to show the differences. Regression is not something that is very well defined or understood in relation to autism but I think it is known that development can stall or alter and this must be investigated.

fanjo, next time you are with a neurotypical 18-24 month old, check out the way that even the non-verbal ones can communiate precisely what they want to say through gesture and the odd word and bringing things to show - DS1 and DS2 were definitely not like that - was your LO before the regression?

It's so hard to explain but when you see it, it's astonishing.

She was never "like other NT children" in the depth of her interaction and bringing things, in fact before I knew there was a problem I always used to think other children were all very advanced, until I realised they were normal and DD is not.

I didn't have huge concerns before this as we just always thought she was very bright and very interested in objects/letters etc.

The regression only involved her speech. She actually became MORE interactive with the loss of speech. She is now bringing me things to show me, and trying to have conversations with me (not always successfully yet) and generally becoming "more normal" in her interactions.

Her speech is still much much more unclear and slurred than before though, she sounds like she has learning difficulties or is deaf, whereas before she was more "in a world of her own" but sounded very clear and older than her years.

It's all very strange.

She has regressed in her language and has more repetitive habits but has become much more interactive.

I hope we get to the bottom of it.

Linglette - I agree with you, i often catch myself thinking parents of NT children have it easy, however since DD doesn't have tantrums (yet?) and is super easy going I console myself with that.

Linglette - I am so pleased your son is doing so well. Apart from this regression it sometimes seems like my DD's problems are delay-based and she is growing out of them too.

Maybe wasn't quite right to say she sounds like she has learning difficulties, but her speech is very slow and drawn out and mispronounced so that is what people tend to think (although she is very bright in some ways).

I think you need to stress that you are unhappy with the level of tests she has had prior to this diagnosis being made. I personally think they need to do an mri and the chromosome analysis before they diagnose autism, especially if you say she lost physical ability too.

Thanks.

To be fair I think they would have done all the tests urgently if she hadn't been improving.

Have been told they will do blood tests once she gets this elusive appointment.

Keep putting it off chasing it up as I think it might arrive in post that day but it never does.

Noone has mentioned an MRI but I hope they will once I tell specialist the full story.

Have even been racking my brains to think if she hit her head or anything but she didn't.

But like you said if it was you they would have whisked you in for an mri. I don't want to put thoughts into your head but what if she had had a stroke or something? Things like this should not be ignored

i know, I have thought of that, it's OK. Will chase up if appt doesn't come through in next day or two!

The drs did say it was of concern but I think they were reassured as she was improving and not deteriorating. Still, I agree, they are not taking it seriously enough!

Surprised that you haven't been offered an MRI. My son had one to rule out any physical cause such as tuberous sclerosis, and was alo given an EEG.

Best wishes