Utterly confused... am i making this up??? (bit long - sorry)

[misscutandstick]

DS5 is almost 2. Im convinced that he has Autistm. Why? well he doesnt speak at all (used to say about 5/6 words, but doesnt now), doesnt point (although he used to, but stopped) even used to sign a couple of things too - but again doesnt anymore. He sometimes toe walks, flaps his hands when excited and holds his arms at a very peculiar angle. Has poor eye contact. Doesnt 'play' well, just kinda mouths everything, has NO imaginative play, and pretend stuff (dolly high chairs, plastic food) just confuses the hell out of him!!! He holds his head at a very odd angle a lot of the time (same angle) and even walks into stuff because he cant actually see where hes going when he does it! He has a big fondness for plastic spoons!?! and likes holding small pebbles or small bits in his mouth (which is extremely worrying as a choking hazard). Hates being naked, or having on damp clothes. He always needs to lay a certain way in his cot (widthways) even tho he doesnt fit well.

BUT

He likes me hugging me, tho ive not seen him enjoy one with anyone else. He cant stack even very basic blocks, and doesnt NEED order ie. not bothered about doing things in order or things being 'in the right place'. Hes actually quite laid back. He will go with anyone, stangers dont bother him one bit, and noises dont tend to bother him either (although he does have 4 older brothers).But hes really not keen on bright lights. Hes a bright alert loving happy child.

I understand that not all people will exhibit the same "classic" symptoms as someone else with the same condition, and the things ive mentioned may just be stereotype symptoms (sorry for any offense, im really not clued up at all). But:

1. does this sound like autism? or something else?
2. If it is, will his personality change? will he get the need for order later? or is it always present, if a person feels like that?

I understand that no-one can tell the future, and the questions i ask probably not only sound very lame but possibly offensive too apologies for that.

I also wonder if he has dyspraxia in there too (his oldest brother has it). Hes often ill, intolerance to dairy, extremely clumsy and unsteady on his feet (hes been walking for about 10mths now) and flaps when hes walking. non-verbal.

thanks for taking the time to read this post, im sorry if ive offended anyone.

Hi Misscutandstick, I am sorry you are worried. I do not know the answer to your questions but didn't want to leave you unanswered!
What I would suggest is to go to the gp, discuss your concerns and ask for a couple of referrals.
Firstly the sensativity to light and head tilt could indicate an eye problem (or not ofcourse!) so just incase get an expert eye clinic to assess him.
Secondly, it may be a bit early but perhaps ds5 could be seen by a developmental paediatrician.
Others (with more experience of LO with and without asd) will reply soon hopefully.

Some of the things you mention could indicate ASD but only a full assesssment by someone qualified in the area could say for definite.My nephew had many outward signs of autism when young but he is fine now, Do you feel that he understands you? Do you feel he engages with you and shares attention with you ? Does he show you things? Does he seem inerested in what you are interested in ? My ASD son is a lot more routine based now (4) than he was at 2 so yes this is something can emerge as the ASD child develops.

Your questions are neither lame nor offensive. What they are is common (if we all had a quid for every time someone posted this question, we would all be able to fund private physio, ABA, equipment, etc. etc.) So if you don't get 100 replies it's because it's almost got to the point where we have to take turns answering. It's not because your question is silly or we don't care.

Your concerns are completely rational and I'd agree - get to the GP and ask for a referral to a developmental paed - usually they live at something called a "children's development centre". They are the people who can assess for you. It's not really possible to say more than that over t'internet as so many of the "possible symptoms" are subjective and many of them perfectly normal kids do at one stage or another. Boys especially.

But I'd stress - even medical professionals often know very little about SN because kids are referred on past them so quickly. HVs, nursery SENCOs, GPs even will say eg "oh you don't need an assessment, he's very affectionate so he can't have ASD". The specialists - and parents on here - will tell you that's an entirely optional part of the condition. So if the first person you speak to knocks you back but you are still concerned, speak to someone else.

Agree completely with r3's post. You have enough concerns that it sounds worth following up and seeking a paed referral asap. I would also look for a hearing test (routine when concerned about speech), and eye test (as you are concerned about his sight).

oh yes, absolutely agree with TCLanger about looking for speech therapist assessment too. Phone up your local department and see if you can refer directly to them - some let you do that, rather than go via HV/GP.

miscutandstick, don't worry your questions are not lame and not offensive. The confusing thing is that some things that point to ASD in one child can be just a strange little habit in another child (does that make any sense?) Plus they definitely change, (usually for the better!) over time. Ds1 has ASD but doesn't really have any issues with order, although we do tend to have some routines cos it just seems to help family life generally. Reckon if your worried you should talk to GP/HV and see if they can refer you, probably be a good idea to get yourself in the system as everything can take so long. Don't worry though, he sounds like a happy little chap!

I don't think there's any harm in having him assessed, be prepared to be told to wait until he's older as there are things that could indicate him being on the spectrum, or him just being a toddler. As he has lost some speech that might indicate on sign, though often very young children can regress temporarily in some ways whilst they are concentrating on other things. However, it is something to bring up when you ask about it.
Looking at the other things you mention, the stopping pointing if he is not using other means of directing your attention to something is worth mentioning as well. The toe walking and handflapping are normal for this age, well, the handflapping if he just does it when excited. But lots of children toewalk before they're three. The play skills and lack of imagination are worth mentioning as well. At just under you're not expecting him to enact complicated scenarios, but if he doesn't do the simple things like feeding a doll, or pretending to brush his hair, then that could suggest a delay at least.
The holding spoons and pebbles are one of those frustrating things that could either indicate he's on the spectrum, or that he's a toddler as many little ones have an attachment to odd items. So with that mention it, make a note of it, so that if you have to wait later for an assessment you can bring it up again.
Ds1, who is o nthe spectrum, loves hugging and kissing. He will also be happy to be with anyone, I've seen him hug peopel who are total strangers to him and, to be honest, that is one thing I would definitely advise you to make a note of. Because the majority of very young children are very wary of peopel they don't know. They will look to their parents for reassurance if approached, for example. Unless he was ill (and this didn't happen often) Ds1 was always (and is always) happy to be left with anyone. He didn't go through the separation anxiety at all, or at least did not appear to. Now, it is highly likely that someoneb will reassure you of their NT child who was just the same, but I'm letting you know so you are aware that a child on the spectrum can be like this.
The same applies with the building blocks. I can remember when Ds1 was 13 or 14 months he spent 45 minutes (I deliberately timed him one day) putting three blocks on top of each other over and over again. His fine motor skills have always been good and whilst I was not thinking of him being on the spectrum at that age I was astonished at his level of concentration, as other babies and toddlers I'd seen had the concentration level of a gnat, flitting from activity to activity.
Ds1 was - and is - a bright, happy loving child as well. And most noises don't bother him either. There are some that set him off, like the hair clippers, but he doesn't often get distressed by noises. At two he liked lining things up and arranging things and he still likes this, but it's not until he's got a bit older (he'll be 5 in July) that more of his rituals and routines have become apparent. So if your ds is on the spectrum you may have to wait until he's older for them to become clear.
As he's so young - and a fair few of the things you mention could be put down to a small delay or him just being nearly two - there is a chance they will tell you to come back when he's a little older. But go and see them anyway, it won't hurt and they will be trained to spot the differences and compare them clinically to other children. Nobody can diagnose over the internet, but one thing I can tell you is that if he is on the spectrum it will become clearer as he gets a bit older.

Speaking as mum to 3 boys on the autistic spectrum...i wish i'd been 'tuned in ' to my eldests problems at age 2- as maybe he'd have gotten a better satrt at school than he had- he is now 14 and we are only just getting listened to despite a diagnosis of ADHD at 7 and Aspergers at 9yrs.

I was crying out for help with him by 18months but looking back, probably cos aspergers was only just being recognised as a diagnosable condition....noone listened- all i got was 'he's just active...he's just a bright lad etc....

Even at age 3 my ds2 had what were suggested issues that a speech and language referal would help- and I ACTUALLY DIDN'T FOLLOW IT UP as noone explained to me that communication is not just about speech...whereas now i understand the amazing range of work the SALTS cover!!!

So...ds3 is 9 and is getting far more help than ds1 ever had at 9 and for that reason I fully understand any parent watching their child carefully for signs of ASD etc.

as, its all about early intervention- and that was not the case even as little as 8 years ago!!!

however....my only worry is (talking from experience!!!) that we end up not 'enjoying the child you do have' when we are so caught up annalysing.

going back 5 years ago i spent every moment possible 'researching' ASD ...looking for answers...i feel 'Lucky' now to have reached the point where i have kind of reached 'saturation point' like a sponge that cannot absorb any more water, i have eneough going on in my head...and don't reseach any more. I actually find having all 3 boys ASD has helped me reach this saturation point quicker...as all 3 are very different and in different ways range right through the spectrum!!!

Many many thanks for all your replies, its lovely that you all took the time.

Riven: Hes being assesed with his speech at the moment, tho as always 'professionals' are always extremely reluctant to give any clue as to the cause of a problem.

Magso: I hadnt really thought of the tilt as being an eye problem, thanks, will definately look into (pardon the pun) that as a cause.

CyberS: It has become very apparent lately, that actually he doesnt understand much at all - even basic things, like his name, or what 'juice' is. He has never brought anything to show, if he does bring something to me - its to dump it on my lap. He doesnt engage in play or interest in what his brothers are playing with.

R3D: many thanks for your support, it can sometimes feel that we are just cattle, and that we dont really get heard (again pardon the pun), just shuffled back and forth and fobbed off.

TC: 'tactile defensive' not heard of that.. what is it?

TotalC: I wasnt that worried about his hearing, although he seems to have selective deafness! should i have it checked out anyway?

Seuss: Yes it does make it all slightly easier to to handle knowing that he is such a happy little chap.

Bullet: he only gets my attention by grabbing my hand, but he doesnt reach for stuff, or point, or grunt or anything... he just goes and waits in the area that he wants something ie. bottom of stairs to go to bed, kitchen for food or drink (tho usually if hes hungary he just raids the fridge!). There is no imaginary play at all, he likes one piece toys that 'do something' he likes wheeling cars back and forth. I dont get a wary look from him about any new situation - he just wades straight in! unlike my 3y/o who needs reassuring. Dot (affectionatly named because hes FTT, and tiny!) cant build at all - or at least has no inclination to - even when ive shown him (as we all do), does love knocking them down tho! Strange you should mention the hair clippers, we have a 'silent' one, and use it often (5sons and a DH!) and it really upsets him, however the vacuum - doesnt bat an eye to, strange!!!

Thanks again for taking the time to reply. It seems that possibly from what you ALL say is that its possible that even if he is ASD of some sort that it wont really be accepted until hes older. Its just that if he is (im sure of it, theres just SOOOOOO many differences between him and all the others - even DS1 who's ADHD and dyspraxic). Its just that if (and im sure of it) that he is, I want to do something now to try and help. DS1 was almost 8, and there was a lot of wasted years and far too many tears, if only something had been done earlier, it would have been better for us all, not least DS1

Thanks XXX

oh my goodness, it took ages to post my last post and i didnt see your post mum23! We are definately thinking on the same lines! DS1 is now 15, so its great to hear how things have changed for the better - it was pretty useless back then! I knew at 2 his attention span was useless, and he was so impulsive, never really knowing why he had done anything - there never seemed to be a reason! His behaviour was definatley easier to manage (for both of us!!!) when i knew what the problem was! I do feel that sometimes I am just a carer, swamped in a multitude of thoughts and appointments. I must admit, sometimes I find myself just watching him and 'looking for signs'- dont really know why, perhaps im hoping that I have it all wrong. I have to really focus on being his mother and enjoying him for who he is. Although i feel I have overcome the greif of 'losing' the son I thought I had, and now coming to love the child I actually have. Does that sound wierd?

Thanks again XXX

" I must admit, sometimes I find myself just watching him and 'looking for signs'- dont really know why, perhaps im hoping that I have it all wrong. I have to really focus on being his mother and enjoying him for who he is. Although i feel I have overcome the greif of 'losing' the son I thought I had, and now coming to love the child I actually have. Does that sound wierd? "

Refers to Dot and not DS1, sorry for the confusion

misscutand stick....

tears in my eyes.

totally understand.

I actually told ds1's school to stop referring to me as his 'mum'...as i no longer feel that is my role!!! Obviously....i was on a down day that day!!!! Hopwever...i really do feel seriosly that its more a case of occaisionally i have a 'warm glimmer of feeling like a mum'...and i love that feeling...and enjoy it fully...because the rest of the time i am 'on guard'

Tc: what a lovely website you have! very informative too. Its very good of you to share such precious personal moments - thankyou.

MUM23: {hugs}, although its an awful situation, its a comfort to think and know that Im not on my own. thanks.

XXX

PS. the 14signs... Dot has about 8 of them depending on the context in which you take the statement.

misscutandstick - it''s a routine precaution to check the hearing of a kid with speech problems, in case there's an obvious physical hearing related cause for the lack of speech.

Re:understanding. Try and use visual cues to help explain what's going on to your DS - gestures, signs and photographs of people/places/food and drink.

Yes TClanger's blog is fantastic - there is a wealth of fascinating and useful resources about speech disorders. DS1 only ticks about 2 -3 of the 14 boxes which just shows you what a weird spectrum ASD is. I like the bit at the top of the blog where M says the 'sky is closes' DS1 once looked at an algae laden pond once and said after a lot of thought 'water broken'. Also I too, have just had my first successful lily of the valley crop after years of trying and failing.

i took my ds at 2 as no speech

started few words by 2 half but not much more nothing would be done until he was 3 incase just developmental

he is the most loving little boy very bright holds eye contact has no obsessions

was diagnosed last thur as high functioning autism

if you have genuine fears DO NOT put it off as it takes a while to be seen by all professionals the earlier seen the earlier help can be given

good luck