2.5 yrs on and the "is mini Kettlechip on the ASD spectrum or isn't he?" saga has almost reached its conclusion..

[kettlechip]

I haven't been nearly as regular on here of late, as I once was but some of you might remember my posts from ages back, usually on the ASD/language disorder threads. MN was a lifeline in helping me recognise ds' difficulties and get him support.

Fast forward 2.5 years - ds1 is now 4.6 and has been under observation since he turned 2 for possible ASD / lang disorder (he went through a kind of regression period where he didn't make eye contact, speech development stalled, and he just seemed a bit detached - this all vastly improved virtually overnight when I totally removed artificial sweeteners from his diet.)

Since then, his language and social skills have come on in leaps and bounds, he's coping well in mainstream school without any support but he still has significant receptive and expressive delays, and processing difficulties. His social skills are very immature compared with his peers, and he still struggles to string functional sentences together sometimes.

After much thought, the paediatrician and I decided that we would go down the ASD dx pathway (I have to move ds to another school for other reasons, and wanted to organise as much support for that as possible) and it's nearly done. The ed psych came to observe today, and has told me off the record that she is not worried at all about ds, she feels he is very unlikely to be on the spectrum, his social difficulties can all be attributed to his language issues, and she's very pleased with what she's seen.

So, although I am greatly relieved to finally have an answer to the is he or isn't he dilemma, I'm now wondering what will happen from here.. It's odd as I'd totally convinced myself to expect a HFA dx, and have no idea what, if anything, they will come back with now. Has anyone else had experience of their toddler having strong ASD symptoms which then recede back as they get older and language improved? I still have massive concerns about his language, and am really hoping that a lack of an ASD dx doesn't throw us out of the support system..

this is spookily similar to the position with my DS, could have written your post virtually word for word. apart from the artificial sweeteners. IME - DS did get some decent SALT support for about a year after the non-DX, but once he started consistently scoring "within normal" range on SALT tests, SALT discharged him. Things are going surprisingly well for DS at school without official support (he's at a small caring school where a lot of children came in with below average lang/attainment). But must confess to a sense of impending doom regarding juniors.....

one word of caution though - although ed psych opinion is relevant, paed especially and probably salt opinion are even more relevant, and could be different.....

Hi Kettlechip,
Its good news really isn't it. But I understand why you're worried about support. Can I just ask (hijack) what you mean by artificial sweeteners? Stuff like fizzy drinks?

Absolutely. Seems to be a very common theme.
We were convinced that DD1 had ASD until she was about 3.5 and even had a private ( with hindsight very unsafe) diagnosis. By the time she was 4 she had some limited language and had had a good six months with a brilliant OT and was a completely different child. By this time she had scored zero in the ADOS test and her traits had basically disappeared

She has verbal dyspraxia and a very long way to go with speech & language, though has never had a receptive language difficulty

I'm delighted that she was so pleased with what she saw.

As to feeling odd - I can't imagine not feeling odd in response to any DS2-related news, even good news, any time soon IYSWIM.

I take it this was at the "old" school, not the school he'll be going to?

hi everyone, thanks for your replies! It's really interesting to hear that others have been in the same position.

Total - that is spooky that you've had such a similar experience. Will report back when I get paed and SALT assessment. I know paed has ruled out classic autism and AS, but I think would take a bit of persuading to go for HFA or atypical autism either. We'll see.. there is a bit to go in all of this so I'm not counting chickens quite yet!

Shells, it was the aspartame found in sugar free squash such as Robinson's and Ribena. We realised after a birthday party when ds had a fruit shoot (of all things, how very MN!!) and was literally rebounding off the walls, that there was something he was reacting to. I don't give him sugar-free anything now, it had such a massive effect when we removed it, it transformed him.

Bubble, that sounds very positive for your dd, glad it's going well.

And lingle, yes, this is the old school - such a shame to move him as he's really settled there and it's a lovely little school. I am very pleased with the new school I've found though, so fingers crossed. ds is pretty adaptable, and apparently well liked at school (bless him, I had no idea, but I think his cheeky smiley disposition is working in his favour atm..) so I'm hoping we can recreate this in our new area..

Still a long way to go though, will update this as we get more news.

looking forward to hearing your update, kettle, as we are in the same position, but a few months behind you. ds is now 4, and went through a phase of displaying loads of asd traits/expressive/receptive language difficulties. most of the traits have diminished significantly, though every now and then, we have a flair-up.

his nursery recently said that he is not coping though, and is setting up an iep for him, so although he has made a lot of progress, there are still areas of difficulty. his main issue at home is verbal stimming, though now these are long complex scripts rather than short phrases. his main problem at nursery is difficulty maintaining attention.

hope the new school goes well. your ds sounds lovely!

Aspartame and saccharine are the devil's food! They are Neurotoxins. I eliminated them from the whole family's diet about 4 or so years ago, as I was advised to by my Neuro to try to improve my epilepsy. It worked so well, I banned them from the house!

Raggedrobin, I will update you (I know you from our email group though anyway I think, must update there too!!)

That's interesting that it helped you to eliminate aspartame too, loudlass. I bleat on about the evils of the stuff any opportunity I get, as I could not believe the difference they made to ds. Within 48 hours of his last drink of squash, full eye contact was restored and it was as though he'd been switched back on again. Apparently it's already banned in the US, why don't they get rid of it here as well if it's that bad?? Need to start a campaign.

I have a bad diet coke habit which I really need to kick, other than that I don't think there's any sweeteners in our house now either..!

can i just ask out of interest,is aspartame found in any food stuffs or just juices?

aspartame is in far too much foods/drinks imo. fecking stuff is vile, evil and i hate it. DD4 is not allowed it at all , and i dont like the rest of the kids to have it either (especially ds3 adhd).
nursey friend told me it rots kids brains.(not exact words but ykwim).
it doesnt even taste nice.
I keep noticing it getting sneaked into drinks. theyre even putting it in the regular drinks now, not just the diet/no added sugar.
id rather the kids had sugar- at least its natural.(ok you would have to be extra careful with their teeth and only give at mealtimes but ...).
IMO aspiritame makes my kids go like this
->

"The ed psych came to observe today, and has told me off the record that she is not worried at all about ds, she feels he is very unlikely to be on the spectrum, his social difficulties can all be attributed to his language issues, and she's very pleased with what she's seen".

Kettle,

Re the above comment.

Whilst you are no doubt pleased that this was said, actually the EP cannot make any such pronouncements at all. These people are not medically qualified to make such a judgement. Also these people are under pressure by the LEA not to readily issue statements and this may have also been said to you for that reason.

The paed's words are far more prescient here and I would be taking heed.

A small and caring infants school can be great however, I would have to also sound a note of caution. I would be wary and continue to monitor his situation at school very carefully.

Junior school in particular is a very different ball games and he may find it increasingly difficult to cope without any real support like a Statement the higher up he goes through the school system. It may be that you will need to apply for a Statement for him, infact I would seriously consider doing this now even though you do not have an official DX. You actually don;t need one for a Statement application.

Agree with what Attila said. We went to the middle school open evening because my dd is going there soon. Was tslking to the head about my ds with asd (only 5 just now) and the head said the best thing we did for ds was get a statement. He said they have so many children hitting difficulties at middle school and there is very little they can do for them if they don't have a statement. And for some reason it seems so much more difficult toget statments when children are older.

drloves8 that's what used to happen to ds.

Attila and nikos, noted!

Have been told consistently by everyone involved with ds (SALT, ed psych, paed, school staff etc) that they don't feel he would qualify for a statement. Even children dxed with ASD rarely qualify in our area now, and the area we're going to is no different. Not one person has been encouraging on this score, but will keep asking as I do feel that the main reason he's thriving is because of the staff-heavy environment he's currently in. He can basically have 1:1 attention if he needs it, without the need for a statement.

out of interest kettle, does your DS have any strange intonation/accent at all?

Thing is Attila, what would someone in kettle's situation (which is like mine only I wouldn't call DS2 adaptable - I have to plan ahead usually) actually ask for in a Statement?

What I need is for staff to get more understanding of receptive language issues, not more staff.

Sometimes I wonder whether the other SN mum (daughter is non-verbal but overlapping issues obviously) and I should do a seminar for the reception TAs in preparation for when our kids go into reception.

"Have been told consistently by everyone involved with ds (SALT, ed psych, paed, school staff etc) that they don't feel he would qualify for a statement. Even children dxed with ASD rarely qualify in our area now, and the area we're going to is no different. Not one person has been encouraging on this score, but will keep asking as I do feel that the main reason he's thriving is because of the staff-heavy environment he's currently in. He can basically have 1:1 attention if he needs it, without the need for a statement".

Kettlechip

Ahh, all these people have fed you the standard party line, its a lot of bullshit really and designed to put people off from applying. Its not down to them to say if he would qualify or otherwise for a statement, besides which blanket policies like the one your LEA seems to be doing are illegal in law. They know the law, ignorance on their part is no excuse at all.

The only way you will know re the statement is to actually apply for it personally on your DS's behalf.

I would be also speaking to IPSEA to start with to see if they have complaints about your particular LEA or county.

I suggested the statement as certainly not all school are staff heavy and or truly nuturing by any means; infact in Junior schools it is usually only 1 TA (who is often untrained and would certainly not have any real knowledge of the world of SEN) per class. I am concerned that come Y3 in particular your son will struggle badly in school.

Hi lingle,

re your comments:-

"Thing is Attila, what would someone in kettle's situation (which is like mine only I wouldn't call DS2 adaptable - I have to plan ahead usually) actually ask for in a Statement?"

I'd have a bloody good look at parts 2 and 3 and be prepared for a Tribunal hearing against the LEA in question if they did not budge.

I'd also look for SALT in part 2 of the statement doc and ask for all support to be specified and quantified (as it should be in law).

The statement content is actually down to the LEA who base their findings on the reports submitted to them by the professional bods who the child has seen to date.

"What I need is for staff to get more understanding of receptive language issues, not more staff".

Well yes indeed but no-one in the LEA wants to pay for that unfortunately. I would like to see all TA's go on an Early Bird course at the very least. SEN within mainstream is done on the cheap.

"Sometimes I wonder whether the other SN mum (daughter is non-verbal but overlapping issues obviously) and I should do a seminar for the reception TAs in preparation for when our kids go into reception".

A good idea however, as TAs change from year to year they would have to be at the seminar as well. I'd also include all the teaching staff to attend such a seminar as well.

Total, no real accent, but he does sound a bit mushy and immature. He has problems pronouncing words properly - afternoon might be reduced to arternoo for example. You know what he means but he sounds more unclear than his 2 year old brother. He can reproduce sounds in isolation but once you get to longer words he gets stuck. It's as if his processing only allows a short burst of information at a time, he can still not repeat a full sentence back to me. ds2 (my little language yardstick!!) could repeat words at 12 months and is repeating sentences at 2yrs.

Will pursue statement option, but it's a difficult one if you feel that nobody at all would support it. Will see what next SALT assessment throws up as that might be my route in.

To further confuse things, H was apparently incredibly similar to ds at the same age, and it had ironed out totally by age 6, I'm not assuming ds will be the same, but the parallels are very interesting.

And arguably H's social and empathy skills didn't ever quite develop fully in the end (am going through divorce at the moment but that's another story!)

Hmm, right, maybe I'll ask the other mum if she'd be interested. Her daughter has greater needs than my son but she has mentioned to me that she always has to do the "you need to say less" thing with the staff.......

Adults find the whole "say less" and "observe, wait, listen" thing counter-intuitive so I definitely think there's a need.

do you mind me asking roughly what parts 2 and 3 are about?

Lingle, I did that with DS's nursery staff when he was about 4. Just a 15 minute talk with a little hand out and some basic
OWL stuff and strategies. They were HUGELY grateful and appreciative.

totalchaos, i was interested in your question as ds has very stilted intonation and people are always commenting on his accent. to be honest, i think it's a t.v. mishmash of different accents. i can usually tell when he is using echolalia as he develops a birmingham/welsh/liverpudlian/whatever accent.

why did you ask, if you don't mind me asking?

Just seen your reply Ragged, reason I asked is that I feel that weird accent is one of the more obviously "spectrummy" things about DS iyswim and I suppose i do sometimes have a niggling suspicion that the DX process (1.5 hours in joint clinic) wasn't thorough enough.

i feel the same, totalchaos. there are a few things about ds that makes me think he's not on the spectrum, but this is one of things that make me think he is. i work in a secondary school and there is a boy on the autistic spectrum in one of the classes i teach in, he has "the accent" and always reminds me of d.s. this boy's social language is only very subtly different to the other kids, but the effect on his ability to form relationships is very noticeable. i suppose this is what concerns me most for the future.