Worried/Aspergers?

[hmb]

I am a little worried about Ds, and I was hoping that Mumsnet might be able to give me some advice. Ds is almost 3. He has some problems with speech development, but it putting together 4-5 word sentences, and 2-3 related sentences. He points at things that interest him, and shouts look! His gross motor skills are fine, he runs, jumps, kicks a ball and climbs very well. He is not interested in colouring, but can hold a pen and scribble. He taks part in imaginative play, but likes to play alone. He is very, very affectionate, and loves to hug, cuddle and be kissed, and he makes excellent eye contact. So far so good. However, he has mild obsessions about trains, cars and planes (these seem to be getting better), eats his food in order, has a massive tantrum in the shoe shop or having his hair cut, sometimes finds it difficult to take part in activities at nursery, doesn't like change (but will go along with it), and likes a routine.

His nursery has flagged up the language problems as a possible reason for his frustration and tantrums, and we are working on them, with some success. However, I am worried that there might be something else that is a problemie the milder side of aspergers. I am on my own at the moment, and all my worries get blown up, out of proportion. I'd be greatful for any feedback

Thanks

I don't have any experience of Aspergers, but he sounds like a fairly normal 3 year old to me. My eldest was extremely gregarious from birth, but youngest (now 5.5) has always liked time to be on her own, and will often prefer to do her own thing rather than have friends round. Both children eat their food in order (one starts with favourite, one starts with least favourite) and I can actually remember doing this myself (perhaps I've got a problem ). Youngest is definately more 'difficult' re: tantrums if things don't go her way, but it's definately a frsutration thing - if her drawing is not as good as she wants it, she will throw a massive wobbly and rip it up. Can't remember the website, but read an article on 'the sensitive child' which really struck home. It basically said some children (and adults) are more sensitive to everything, and these are the ones that tend to 'blow up' more frequently. It also suggested that they may be more sensistive to sound (hates loud/sudden noises) and touch (can't wear anything scratchy) than others. Positive points were that they tended to be very strong willed - when they put their mind to something they do it, and also tend to get very involved in a hobby, often music or art (youngest dd can make anything out of a few scraps of paper and some sellotape). If you're interested I can find the website for you (but probably not til next week). I'm sure others on the site with more experience can answer any of your questions, just hope they can put your mind to rest, it's horrible when you are the only one worrying isn't it.

Thank you so much for the feed back. Both dd (6) and ds are very strong willed. It makes them very hard work, but also an awful lot of fun Dd doen't like loud music, but Ds does. And you are right Dd does get very 'wrapped up' in doing things. With her it is the arty stuff, and with ds it is trains, cars and planes.

Tanks for the support. I need it right now!

I'm not an expert on Aspergers, hmb, but I'd honestly say that he sounds pretty normal for many little boys in particular. We've certainly had some of these little obsessions with ds, although he has outgrown the concern with "special" routines/toys/cutlery etc in recent months (he's 3.5 but still prefers to eat his food in order!).
But your ds sounds very much like a little guy we know and love dearly who was just a little more sensitive and highly strung than your average toddler. He was reluctant to join in certain activities at playgroup, hesitant about speaking in company sometimes, and prone to tantrums when many other children had almost outgrown them. He is now nearly five and much more settled and at ease with the world. He's always going to enjoy solitary pursuits like arranging his toy dinosaur collection, but he now joins in at nursery, plays quite cheerfully with little friends, etc.
I know what it is like to be on your own with your child and suddenly think, eek, he's got X. And that's just when dh is working late! It must be such a worry for you at present, every little concern must seem worse.
I think nursery have your ds sussed and with all of you working on his language skills I am sure things will improve.
I think it's right to say that a kisser, cuddler and eye-contact maker is very unlikely to have even a mild autistic spectrum disorder. We know a teenager with Apserger's and mild learning disabilities and although he copes really well with social life (handshakes, family kisses etc) it is evidently something he is not happy with and has worked hard to learn. We didn't know him until he was 11 but apparently he always found eye contact difficult and it was that which first alerted his family. HTH

Hi hmb. I can understand how you are probably worried sick about your d. I have worked with children with Aspergers and although it is wise not to diagnose over the net, it does not sound as if he has Aspergers. Lots of children, especially with less developed language, find comfort in routines and find change difficult. It sounds as if you are very sensitive to his needs and this will help to support him. Hope this is a help.

Thank you all very much for the feedback. It is helping me to put things in perspective. It is so easy to see some traits and concentrate on them without lookin at the whole picture. Ds is slower to speak, and I know that he finds it frustrating. Dd was very early to talk, and I have tried my very best not to compare them. He does like his routines, and has been quite obsessive about things, but his interests are widening out as he gets older.

Thank you again for the feedback

hmb - I'll write more tonight- only saw this this morning- and I've got a homeopathy study day today. Basic message will be don' worry too much but I want to give you some pointers, and I don't want to rush my reply.

BTW- where are you livng hmb- am I right in thinking you're abroad?

Thank you so much Jimjams, I realise that you must be very busy. You know what to look for. I have spotted some asperger's 'like' behaviours in ds and I'd appreciate your views. To my mind if Aspergers is at the lower end of ASD then my son is somewhere between , what was your phrase, neurologically normal and Aspergers.....do you see what I mean? It all seems to be on a curve. I hope the study day goes well. Thanks.

No Lincoln

Just one quick thing- you seem particularly worried about the mild obsessions with trains etc- but tbh that sounds like a boy thing. An autistic like obsession is a little different in such a young child. It shows itself as something like having to shut a door in a certain way. Toy trains having to be in a certian place, having to take certian route somewhere. DS1 had an obsession with stairs for a few months. If we went somewhere where he was anxious he would just get glued to the stairs (or a door) and would refuse to move. He'll still look through home magazones for pictures of stairs and then carry the picture round with him all day. Ditto washing machines, microwaves and toilets.

An Asperger type obsession would come in an older child and would be talking only about one subject- computers for instance- but really you're talking about children of at least 8ish (and AS isn't really diagnosed before 8 at the earliest to be honest).
Anyway I'll write more later- how does he play with his trains- and what position does he get in to look at them (btw- he sounds fine to me so don't panic about the questions- just want to reassure).

He gets right down next to the train, with his head almost on the floor, pushing it around, making chuff chuff noises. He doesn't have fixations about the order etc. He did have an obsession about having to carry a little girls bab into nersery for her, but that is fading. At one time he only played with his train set, but now he is playing with other things.

He also makes things crash into each other.....I blame Thomas the Tank Engine for that one.

Head down on the floor is a sign- but playing with toys properly (ie pushing train along and saying chuff chuff) is totally normal.

OK before I get into things that would worry me I will say that so far you haven't said naything that would particularly get alarm bells ringing but first a bit about diagnoses- At his age you really wouldn't see Aspergers (well it gets confusing and it's all semantics but the pros would be talking ASD unless you were in the States when you'd be PDD) What I'm trying to say is not to say "is he Aspergers/between Aspergers and normal/high functioning autism/ etc etc" because at 3 you would have no way of knowing. All you can do really is say "are there enough signs here to worry me?" (we're all abit on the continuum and all children will have some signs if you're looking at a checklist).

Ignore affection- it's irrlevent! There are autistic children who are very defensive about being touched, but every autistic child I happen to know is very affectionate. DS1 is far cuddlier than his peers and than his NT brother. So forget that entirely.

OK onto things that would ring warning bells. As a baby either very hard to please, always crying or extremely placcid. My ds1 was the easiest baby in the world. He was happy to spend a long time looking at ceilings! Very smiley, very sociable, very placcid.

Not playing appropriately. Rather than playing with a train, just looking at the wheels. As a baby maybe moving things from one pile to another. Lining things up (although ds 1 have never done this- much to the consternation of the clinical psych- and his most NT friend did it all the time). Maybe turning a ball over and over.

Manic laughter (!!) They all seem to do this! At 4 months ds1 heard his first pigeons and just killed himself laughing- really creased up like it was the most hilarious things in the world. DS2 has never laughed like that. He laughs but it doesn't have the manic edge! At 18 months DS1 would read books really intently and then turn then upside down and kill himself laughing all the way through (becuase they were upside down).

Being "moved" by music (especially classical). When the olympics were on the theme tune would make ds1 shake. He would stop and go rigid when he heard it.

Being obsessive about things like lights. Maybe they always have to be on, maybe flicked on and off. Obsessions about traffic lights. Absolute fear or absolute obsession with the hoover. DS1 used to pounce on the hoover and glue himself to it. He's now terrified of it and cries if I turn it on. But obsessed with them. if we see one in a shop or on tv or in a mag all we get is "mmdan mmdan" (hoover hoover).

The big big big one is pointing. Most NT childen develop pointing at around 12 months. And the important one is protodeclarative pointing- pointing out things of interest (as you mention above). DS1 does that- but not as often as ds2, and he's a bit vague about the direction he's poinitng in. It also developed later. (Although he had shared attention from a young age) Rather than point at something in a book. or something he wants he'll tend to take my hand and place it on the object (that's what the checklists mean by "using adult hand as a tool"

I think eye contact (especially with familiar people) is a bit misleading. Ds1's eye contact when he is relaxed is excellent, but when he's stressed non-existent. It's generally pretty good with adults, but if a child approaches him and he isn't sure what they want him to do he will totally blank them. It's incredible- like he hasn't seen them.

Finding copying difficult. You may have to actually teach things like drinking form a cup, using a spoon (I did- at 18 months). Couldn't believe it when ds2 just drank out of a beaker at 4 months. Still get a feeling of amazement when he does it now at 14 moths.

DS1 isn't bothered by change, isn't particularly fussed by routine. Hates shoes, haircuts etc. IME an autistic tantrum is something different form a usual toddler tantrum as it has a real "fear" behind it (not to say they don't have normal tantrums as well). But the intensity of one which has been kicked off by the autism- rather than just a stop is something else.

Imaginative play. If your son can pretend that a stick is something else, say a gun or a spaceship- then you have absolutely nothing to worry about. My son can't do that although he will play imaginatively with things like his teletubbies play set or dolls houses. I bought him a dolls office set the other day (computer etc) for his fort. He liked the swivel chair, but he twisted it and examined it upside down rather than pretending a soldier was sitting in it or something.

Other oddd things. Looking at things out of the corner of their eyes (that's a classic). Flicking things in front of their eyes (ds1 doesn't really do that but lots do) He does run a train station by the side of his head though.

DS1 likes other children, and likes being around them but will ignore them. If you say "A give so and so a kiss" he will do, but tends to keep away as much as possible. Like seeing friends though and would be really upset if I said we were going to see someone who was then out.

Um that's all I can think of really. Hope it's put your mind at rest! Things like an insistence on rouine would tend to go with an anxious child- not necessarily an autistic one (autism makes the child anxious which then leads to the routines- but you could just have the anxiety without the autism iyswim),

If youa re worried- have a chat to your HV. As he may have a language problem it may be worth getting a referral to SALT. Your nursery may be able to refer, your HV certainly can. I only say that as the waiting lists are so so so long- and you can always cancel if you don't need the appointment.

It may be worth trying to get hold of some stuff on the Hanen programme- it's good stuff and makes a difference. It was developed for childen with language/communication delay. I can't remember the name of their parent book, but I can find out. I think it's sold through Amazon. Hanen techniques really helped/help us, and their great for all degrees of problem.

Once again though I haven't really read anything in your message that would particularly set off alarm bells. Feel free to ask anymore questions. I've tried to give examples of things I know other autistic chidlren do, but I'll have missed out loads.

phew- long message that last one. Crashings good. I'd love my ds1 to do that!

Jimjams, thank you so much for your exceptionally helpful information. There is nothing like some direct advice from someone with first had experience. I had looked at a number of websites and was still lest feeling a little concerned. As you say we all have some of the traits, because it is a continuum.

The signs he does show, he does line things up, or rather he used to do this, and is stopping, he fiddles with light switches, but (I think) more of an attention grabbing thing, and he is very interested in traffic lights, as a baby he loved taking everything out of boxes, he also loves music.

His tantrums are bad, but no worse than his sisters. She started having tantrums at 1 and they went on till she was about 4 and a half. At their worst she was having about one a day. He has far less. I guess I just have very strong willed kids.

He was slow to start with imaginative play, but now almost everything becomes a rocket or a 'plane, Lego, crayons, breadsticks. A box is a 'plane. He did copy, and would follow me hoovering round, dust, and 'cook' pasta. He dresses up with his sister, and other friends.

He has a good sense of humour, but it is appropriate, and 'graded', sometimes giggles, sometimes belly laughs.

His interaction with other children is improving. He will say hello when he goes into nursery, will hug his friends, play with them when the mood takes him, and says goodbye, and waves when we leave.

The nursery has identified the language delay as a possible reason that he has been slow to interectwith the other children and take part in all the activities. The SENCO used to be a SALT and has set up a program for us and the nursery to use (very direct short sentences that I think you used with your ds), and it is paying off. I keep a diary of examples of what he says and we will have another meeting to decide what to do next in 5 months. They will refer us at that point if they think ds needs it. The SENCO is very pleased with the progress he has made so far, It is difficult for me to assess how bad his language problem is, because DD was very early to talk.

You have done a lot to help to put my mind at rest. As you say we all have some of the traits, as ASD/NT is a continuum. Dh is a wonderful man and he is on the AS 'side' of the NT spectrum, interested in trains, planes and computers, becomes abnormally absorbed in things. All of his family are engineers. I think that Ds is just going to be the same way.

It was doubly good that you spent all this time helping to put my mind at rest since I know your son has autism. I hope that you don't think I was a daft woman 'faffing' that her child hadn't reached X stage of development.

No didn't think that you were an over anxious mum at all hmb. I spent a year wondering about ds1 before I was really worried- early signs are subtle. But from everything you've said (especially the box being an airoplane) your son sounds fine to me. I think all babies love taking things out of boxes (ds2 does- and although he's only 14 months I would be absolutely stunned if he turned out to have an ASD). Waving's good as well. DS1 will wave on command- and sometimes spontaneously, but it's very wooden. Hard to explain.

The SENCO sounds good. Short sentences etc are part of the Hanen programme stuff.

THe SENCO and tall of the nursery staff are excellent. They aid that they want to get the language problems sorted before it becomes a real issue for ds. The short sentences are working well, but as you said on another posting they do make the parent sound quite 'dictatorial'. None of that flowery stuff that make you sound like a kind mummy. We do get some 'looks' when we are out, but it is working. Have things progressed on your ds's hearing? It must all be very frustrating for you, and that makes your putting my mind at rest even more kind. It has helped me a great deal.

Ahh the hearing test. The lady who does them has been off on long term sick leave and hasn't been replaced, so we are somewhere on a very long list. My HV and the pre-school advisory teacher are trying to sort something out, but to be honest there are a lot of children who now need hearing tests - probably just as urgently as us. A freind has contacted a private ENT specialist she knows to see if she can help.

This really annoys me about the NHS. If a SALT goes on sick leave/maternity leave they aren't replaced and so the lists just grow longer. Absolutely incredible.

Mind you I kind of think unless the person doing the test is knowledgable about autism it's going to be a waste of time, so we may as well wait until our BIBIC assessment in June, at least they understand autism.

I've been reading through this thread as I've had some concerns about my son. jimjams your list of indicators is very good. I don't think he is autistic but I am not sure about AS?? I am concerned at how slow he is and how I should go about helping him. His speech in particular. I would if you could help me jimjams.

Brief description - he is just coming up to 3 years 2 months. He isn't toilet trained outside the house because he won't ask for the toilet.

He is only just starting to make a conversation but often only when prompted. For instance about a month ago after I picked him up at playgroup after 6 months of asking him what he did that day he finally answered "painting". I would usually just get a totally blank look. Now he has progressed to a more conversational tone. Eg if I ask "do you need the potty" he will say "no I am watching the TV" - a big step I think. He will also sing nursery rhymes but quite badly. And fortunately he seems to have stopped the endless humming. He tends to ask himself questions such as "do you want a drink?" The playgroup have said that he is talking more but they don't understand him.

However a few things do concern me - firstly he never copied as a baby - wouldn't wave or copy sounds - just a blank look. He would never ask for things - only pointing and screeching. He was still doing this at age 3. Now he does ask for things but usually adopts a silly voice or will pull me over to what he wants. I find working out what he wants exhausting as he often has quite a complex thought in his head. And he HATES being helped with certain things. This is difficult because of his age he can do quite complex things (like assemble the parts to the hoover) but obviously isn't physically capable.

He will freak out if we don't do something in a certain way. One example was we arrived at my parents and I rang the bell. He reached up and wanted to ring it himself (hasn't been bothered about this before). I lift him up to ring it and my mum answered the door and he started screaming. I think because she'd come to the door BEFORE he could ring the bell. He screamed for 10 mins. I tried going outside with him and doing it all again but it was too late. I am sure you know what I mean. My mother was furious with him which obviously doesn't help anyone does it?

I noticed his eye contact wasn't good around 18 months but now it seems OK. But in general he has always tended to be a bit in his own world. Again comments from my mother are "I have never known such a strange boy, he never smiles at me"

He won't draw but does strange circular 'amoeba' shapes and tends to like me to draw things for him. He can count to 10 (although often misses out no 5). He LOVES music and his timing is excellent - he likes to 'conduct'.

I can't think of anything else at the moment. I think he may just be rather slow developmentally in some things but I really would like advice on how to bring him on (if that is possible). I do have a referral to a behavioural development unit but I've not even got notification of the appointment and it could be months ahead. I feel bad for not diong something sooner but I always felt he was happy. I am just getting concerned now as he is falling behind with his peers. Also I think he is becoming more frustrated as his thoughts/abilities are more complex but his communication is poor. I also have a dd (age 11 months) who I can already see is a totally different person.

Thanks a lot.

Hi Eulalia

Obviously with a descroption over the internet, it is difficult. I don't want to jump in and say too much when everything could well be fine. There are a few things in your post that concern me a bit. I'll go through them- they may be nothing but I'll try to explain what it is that worries me....

The toilet thing doesn't worry me too much. My son is the same- although in the house as well. But so is my friends little boy and he is not remotely autistic- so don't worry about that.

His speech doesn't sound too bad. The humming would have worried me (we get constant humming when anxious". The "do you want a drink" (ie misues of you is quite auti but could also go with language delay. If he uses lots of echoloalia (repeating phrases he's heard) then I'd be more concerned.

Not copying is a worry-as is pulling by the hand- although that can go with language delay.

assembling parts to a hoover is a bit of a concern- but you could just have a very bright little boy (if you look at the list of features of gifted children it overlaps considerably with AS children).

Yes the bell thing is very familiar and did make me feel a bit shivery when I read it. And no being cross doesn't help anyone at all. It can be really difficult to "correct" that and stop the tantrum. Sometimes I find doing the whole procedure again can help, but not always. We did go through a phase where ds1 had to see the door shut or would go ape. I found that taking him over to it and saying "open, shut then finished" worked- providing he saw it open and shut again. At the time this was big we were being assessed- and the pros said that was the right way to deal with it. The general advice is that unless something is beginning to take over your life you let them go as much as possible. So if he wanted to open and close a door 20 times that's too much and you would have to stop it (with lots of tantrums) but just once is OK. They also said there's no point trying to get rid of these things totally as they just move onto something else. This certainly happened to us we've gone from lights, to stairs, to doors, to Mummy's car, and back to doors.

That trying to get you to do things in a certain way is very familiar- they need control. It's a balancing act- I'm always looking out for the next one and trying to prevent it starting!

There's loads you can do to help. It may be that he is just slow socially and language wise- that can sometime go with high intelligence (think of a typical academic and you'll kwim). It may be worth looking up PDD and semantic pragmatic disorder on the web- you probably wouldn't get those diagnoses in the UK (not PDD anyway), but they probably point to his type of problems.

Good books- I'd recommend Stella Waterhouse- A positve approach to autism- should be available in your library. Don't be put off by the title- it covers everything remotely connected to autism from OCD to dyspraxia to tourettes to high anxiety. I've found it very helpful for understanding the behaviour (which then gives a way to deal with it- you can;t use "normal" strategies- they don't work).

Freaks Geeks and Asperger Syndrome is highly readable relates to the teenage years- but describes the sensory problems well (which could lead to this tyoe of behaviour even without autism as such)

The Hanen programme would be useful- may be worth finding out if there is one being run near you. Their contact number is 0141 946-5433- they would be able to provide their parents book as well which is very good (can't remember the name- something like - it takes 2 to talk)

If your son is really incomprehensible it may be worth looking into PECS. They have a web site- search for Pyramid Exchange Communication System- they run regular training sessions although there should be someone near you who is PECS trained. It can realy cut down the frustation. In fact whilst typing this ds1 turned up at my side with his PECS symbol for cake! If he finds imitation hard then PECS is a better option than Makaton.

If you can afford it it may be worth looking at ASLTIP (the Association of speech and language therpaists in independent practice). For about 100- 150 poinds you could have a full assessment, report and tips and ideas of suitable things to be going on with. Private SALT is very very expensive (at least 50 quid an hour) but an assessment + advice session can be well worth the money (made a huge difference to us). A private SALT won't (and shouldn't) diagnose but may be able to give you pointers.

Other options to try are to contact portage- you could try directly- I think parents can usually self refer. Many are PECS trianed, you don't need a diagnosis and they can be very helpful (they come into your home for an hour a week to set up a home programme). They may say 3 is too old but we get it at three and a half.

Um that's all I can think of for now. Hope I haven't scared you- it's impossible to say over the web really- I haven't read your story and though "oh my god he's autistic" which I do sometimes! A couple of things you've mentioned I would find a little worrying- but not a definite indicator or anything.

Where abouts are you in the country? If you are near Plymouth or Bromley I may be able to offer practical help- SALTS in Bromley (Pecs trained)/Sevenoakes (Hanen trained)- and various things in Plymouth.

I really should preview- wish they had a spell check on this!

jimjams - thanks very much for the long post.

I've not got time to respond properly just now but just to mention I live near Aberdeen so a long way from the areas you mentioned.

What is portage?

Thanks again for giving me the time. I will get back later.

Also hmb - sorry to hijack your post!

Please don't be sorry. I was just glad to get the worry off my chest and I knew that Mumsnet would be a good place to do it. I'm glad you felt the same way.

Portage is a home visitng service. It's usually run from the local child development centre or somewhere like that. They work with children with all sorts of developmental problems. They can be very good- depends a bit on your worker, but because they get to know families over a period of time they can offer very practical help. I think families can self refer.

Not too sure about Scotland. It might be worth looking up HOPE- not sure what it stands for or which bit of Scotland its in, but I do know the person who runs it is very good and helps families to find out where they need to go to get the necessary help. I'm not sure whether it's anywhere near Aberdeen though. They may have a website- sorry I'm being a bit vague.

It may be that your son needs a bit of time to catch up. IN a way waiting for the assessment group thingy may be the best option as you don't really get much in the way of services once you have a diagnosis (or not as the case may be). If you can affors it I would recommend one session with a private SALT just to get ideas and coping strategies- it can make a big difference.

Um had a think as well for both of you- and other general things to look out for - are things like losing words. DS1 actually started to talk at 8 months- and added quite a few up until about 13/14 months ish (although he tended to "lose" words as he said new one). Then nothing for about 6 months. He could "recite" books and things using intonation and could hum perfectly but no words. Losing words is always something worth mentioning to HV's or GP's or SALTs if you can get one.

Pointing I've mentioned. If I asked ds1 where a picture was in a book he would kind of use his whole hand rather than his index finger. I've really noticed the difference today as ds2 has been pointing at books- both to hear me say words and in response to "where's the....." I think if ds2 had been the elder child I would have noticed the problems earlier.

Hope the above put your minds at rest. If there is a problem the language development is abnormal as well as delayed. So rather than building up language from blocks whole phrases may be used (for example ds1 will say "press the button" in many different circumstances- appropraitely- but always the same phrase--no slight variation at all). Language is kind of learned in chunks with each new phrase having to be learned separately rather than produced independently. That's where the echololalia that I mentioned earlier comes in.From talking to other parents another common feature- seems to be saying something perfectly- and then not again. Sometimes this can be whole sentences- every now and then with nothing in between. DS1 doesn't do that as such although he will often say a word correctly the first time and then- gobbledegook. So "seal" was said correctly over a year ago- andnow it's "deedan" Ditto pooh (as in winnie the pooh)- 18 months ago it was "pooh" very clearly- twice- then changed to "mmm" In the last few weeks it's become "unee um mmm" (pefect intonation- almost total lack of sensible conosonants)

Anyway the upshot is that if your children are developing language normally, albeit slowly then you don't really need to worry, it's only if it's disorded that you may have a problem (and may not).