worries about autism

[Saker]

I am worried about the development of my second son so have been reading some of the threads on autism on this site and that has worried me some more. I would really appreciate it if some of you with experience of this condition could advise me as it seems that a lot of the information on the web is too stereotyped and doesn't correspond to the real picture of a child with autistic tendencies.

Ds2 has had motor difficulties since he was a baby. He sat up late and crawled at 1year and walked around 17months. He still walks with a very unsteady gait and struggles with stairs and can't begin to jump although he can climb okay. He also has clumsy fine motor skills and seems to have problems with visual perception - for example he is now 2y 9 months but really struggles with basic shape sorting. His
language skills have been slow to come on. He talks quite a lot now in sentences and has a big vocabulary but his articulation isn't very clear so he can be hard to understand. He is being seen by a paedriatician and was seen by the
physiotherapist and OT who discharged him and seemed to suggest he would grow out of it. Uptil now my feeling was that he probably has dyspraxia, but since reading some of the threads on here I am wondering about autism as well because he does have some strange behaviours.

Things that worry me:

• he pointed late - I kept a record of both my children's development and at 18 months I wrote for ds2 - "rarely points at pictures". And at 20months I wrote "tends to use his whole hand to point". However he does point at pictures in books now using his index finger and he does tell you when he sees things of interest, although he doesn't always point. I wondered if his motor skill problems made it harder for him to point and track.

• he has started repeating phrases sometimes like
  "That's naughty", "use your spoon"; he usually uses them in appropriate context but it seems a bit like echolalia

• he runs off when we are out as fast as his legs will carry him; I couldn't trust him to walk on the pavement or avoid anything dangerous even when I tell him

• he lies down flat on his tummy on the floor whenever we go somewhere new or somewhere he is unsure of. He doesn't have a tantrum or anything but just lies there until I pull him up and then we carry on

• we don't really have very good two-way conversations sometimes I feel like he is just saying what he has learned I want to hear. For example a while back when I picked him up from nursery, I would say "did you have a sleep today" and he always replied "in the pushchair, cried when I woke up, Sally gave me a cuddle". However since he has stopped having sleeps he doesn't say that anymore even if I ask him if he has had a sleep so he does seem to put it into some sort of context.

• he has never asked me the name of an object - never says "What's that?" although does ask for things like a drink or a biscuit

• suddenly seems to get irrational fears like the last few days has been hysterical about getting in the bath. Eventually got him to stay in by playing games with toy animals but every now and then suddenly panicks again. Previously loved his bath.

I know this all sounds quite bad but on the positive side:

• he seems to play quite well - he has never lined things up, banged or spun things etc
  He puts his trains on the track and pushes them round, he plays with his plastic animals giving them food and drinks and just recently making them say basic things like "I want a drink"; He feeds and baths his doll. However it doesn't often seem to branch out into ideas that I haven't played with him before. He likes pretending to be a monkey or a lion etc

• he loves stories and is always hungry for new books and stories

• he like Mog from the Judith Kerr books and recently has been very keen on hearing stories that I make up about when Mog came to nursery or Mog played at Nana's house with him etc. Ds1 did this and is very imaginative, advanced with speech and expressive.

• first words were mostly social like people's names, hello, goodbye etc - don't know if that means anything.

• understands a joke - like his dad says "I don't want anyone to say banana" - he stands up and shouts it immediately - much laughter - again I don't know if this of relevance

• doesn't drag me by the hand to get things/ show things although does bring things to me that he wants me to do

oh and is very affectionate and cuddly but I gather this means nothing

Anyway sorry this has gone much too long and I am at work - daren't do it at home - dh says I spend too much time on the internet worrying myself sick about him.

I would appreciate any advice

Many thanks

Hi Saker. Hello from me too. My ds1 (3yrs 11mths) has a diagnosis of autism. He also got into the system after failing his 2yr development check and was finally diagnosed earlier this year.

Ds1 had a lot of echolalia. He started by repeating the last 2 or 3 words of sentences. He then stored up set phrases and used these in context. Like dinosaur's ds he also has problems with pronouns. If he needs help, for example, he will say "Mummy help you" rather than "help me". He also tends to speak about himself in the 3rd person rather than saying "I" or "me".

Ds1 tends to lie down on the floor when he feels overwhelmed, usually if we're somewhere where there are a lot of people about.

Is your health visitor helpful at all? Or would your GP be willing to refer you to a Child Development Centre? It might be that last time they were so busy concentrating on dyspraxia that they didn't look for anything else. I'm trying really hard to think of something useful but at the moment I'm failing miserably!

dino and coppertop's posts are great- and probably most relevant to you - as if you son does have autism he is certainly high functioning.

I think I would be concerned about the same things you are concerned about- but they could still indcate dyspraxia rather than autism. My autistic son is also dyspraxic and often its hard to see where the autism stops and the dyspraxia starts. How is your son at copying? Does he copy other children? Since having a "normal" second child I have been stunned to discover how much copying he does. He copies his elder (autistic) brother all the time, and at nursery he watches the other children to see what to do (he's 2). I remember people used to say to me "oh when ds1 sees the other children doing x he will do it as well", and I never used to know what they were talking about as he never copied other children.

My son is quite a distance along the spectrum (5 and still has very limited language- 18 month level) but he often seems to understand jokes and teasing as well- for example tell him not to touch something and he will "pretend" to do it whislt shrieking with laughter. often these "jokes" get quite fixed though, so for example every day he will pretend to run away from his LSA when he gets to school- again laughing his head off.

My autistic son also has basic play- feeding, putting people down toy slides etc etc- but he doesn't find it easy to play. Without guidance he tends to wander or just look out of windows.

In your position I think the best thing to do may be to go back to the paed- basically with the list you have here. Is the pead any good? If not private consultations can be good but difficult to arrange- or somewhere like BIBIC (who see very high functioning children commonly) are able to provide a report that can basically "help" push paeds etc to diagnose, or parental concerns to be taken seriously.

Much sympathy- that is he isn't he time is awful....

Thanks so much for so many quick replies.

Ds2 is being monitored by the speech therapists although they don't seem to be concerned enough to suggest actual therapy (or maybe there isn't the funding?) He is due to see the paed now although I have no appointment at the moment so probably will have to chase that up. No-one has suggested dyspraxia either really - no-one has suggested anything and some people who see him seem to think he is quite badly delayed and others can't see what I'm worried about so I get very mixed messages. However recently portage has got involved and is starting to try to arrange some one-to-one at nursery so hopefully that will help.

In terms of copying, yes I think he does. He loves his elder brother and often spoils his games by trying to join in and then knocking everything over. He watches things that Ds1 does very intently also.

Sometimes he plays well by himself and sometimes he does just wander about and pull all the cushions off the settee.

He seems quite good with pronouns. In fact Ds1 went through a long phase of saying you instead of I and vice versa but Ds2 seemed to skip that. He also seemed to skip a lot of the phase where they use their first name instead of "I". I am less sure about his understanding but one of his physical problems is poor proprioception "physical sense of self" - so if you ask him where something he can see is like his tummy he's fine, but gets very confused about ears or eyes etc

I was feeling low after posting this and then picked him up from nursery and he told me he had been to feed the ducks and he had played outside and I felt a bit more hopeful. Like you say it's so hard not knowing. Thanks for the support - when I talk to other friends with "normal" children they often tend to dismiss things and in the end it doesn't comfort you! If I hear Einstein didn't talk until he was four once more.......

I know it's just a waiting game and see where we go.

Thanks again.

The "Einstein didn't speak until he was 4/5/6 (insert age of choice)" used to drive me insaaaaaane!!!! It was usually followed by "Perhaps you just need to talk to him more". Grrrrrr!

Portage can be really useful. Our portage worker is brilliant at getting things organised for us. Life has been so much easier since portage became involved. It's just a shame that it will finish in a couple of months when ds1 will no longer be a pre-schooler.

I am shocked. not by you ladies, but at the fact that some kids autism was picked up at 2 yr checks. round here they have stopped 2 and 3yr checks. so the kids have a check at 2.5years. which means that if a problem is there at 2yrs it could be another 6months down the line b4 its picked up, and surely things are best picked up as soon as possible. I am still going to be pushing for a 2yr check with dd2.

Nothing was picked up at any checks with my DS although he was dxd at 2 (his second birthday in fact). People always say "aren't you lucky to get a dx so early" but the truth is that he had been not developing as he should or showing any signs of communication or interaction for all of those 2 years so, to me, it was bloody late!! I got the HV to refer us to the CDC but it was all lead by me, every time I'd raised questions before like about him rocking all the time, not turning to his name, going crosseyed etc, I was just told not to worry, its just a phase. We only got the appt with the paed quicker than the 9 mos waiting we were quoted because I kept ringing to find out if there was a cancellation so, when we got one on our DS's birthday, we couldn't really turn it down. Even then they didn't dx "autism" but some coberlarti called "severe communcation disorder, possibly on the autistic spectrum". When we got a private dx of "Autism" did the NHS paed change the dx which, interestingly, he did with no argument.
Sorry to divert thread but it annoys me that there's always all this talk of early diagnosis but I don't see that its got any better.

We'd had concerns right from the beginning about ds1, although we didn't consider autism until he was a toddler. Each time we were fobbed off with a different excuse. Even as a newborn he slept only for a few hours and even then only if he was being held tightly or in an enclosed space. This was apparently colic. By 13 months I thought that he might be deaf because he didn't seem to react to anything or anyone. The HV said that as he'd passed his 9-month hearing test there was no problem - even though there is a strong history of deafness in the family. The fact that he didn't even babble didn't concern the HV at all. So yes, by the time the 2yr check-up came round it did feel as though we'd been waiting a hell of a long time.

The 3yr check was scrapped round here too. We now get a checklist through the post on the child's 3rd birthday telling us what they should be able to do by their 4th birthday. Not a lot of use even if your child is NT. How many people will still know where the list is or what was on it by the time a whole year has passed?

ROFL @ bloody Enstein not talking until he was 4. Especially as he was probably HFA!

We weren't picked up despite having a referral to an autism "specialist" SALT at just over age 2. I've moaned on here before- everything was screaming autism but we got "mild langauge delay" and ignored for a year. I'd been concerned since 17 months (about autism) dxed at over 3.....

Thanks for your support - I will let you know what happens. My dh worries about him too but he doesn't see the point in going over it all the time. I know what he means but still can't help it.

We are having quite a hard time with ds2 sleeping also at the minute. He has never been great but now although he settles down fine he will wake at least once and sometimes take a lot of settling back again. I'm the only person who will do for him in this situation except possibly my mother which makes it hard to go out. Sometimes he is just messing about in the sense that he goes quiet if you pick him up and makes a fuss if you put him down. Sometimes (usually early in the evening) he just screams and seems to be impossible to comfort. I'm not sure if he is really awake, he just says No Mummy over and over. I don't know if he has nightmares or what?

I don't know if this is just a difficult toddler type issue or related to whatever is the matter with him and that makes it hard to know how to deal with it. Is it advised that you should deal differently with this type of problem in special needs children or just the same as with "normal" children - i.e. controlled crying etc.

Thanks again for all your help. I appreciate it can't be easy for you all either and you must get a bit fed up with being the resident "experts".

I don't know if it's the same thing or not but ds1 suffers quite a bit from 'night terrors'. Even though he's fast asleep he screams and shouts. All we can do for him is try to comfort him until he calms down. He also tends to sleepwalk too so we have to keep the stairgate closed, bathroom door shut etc.

Is there anything that happens in the evenings that could possibly be a trigger for the screaming? At night-time it's usually police helicopters and idiots revving up engines that disturb ds1 - not to mention the family a few doors down who scream at each other half the night and then call out the police on a weekly basis....

I remember when I first found Mumsnet and it was just such a relief to know that we weren't the only ones going through it all. Keep posting, Saker!

ds1 sometimes goes through a week or so when he will cry a lot at bedtime and/or during the night. No idea why. His nutritionist has said it is related to gut problems (and he is constipated a lot- and he has got a lot better since we've been on the nutrition programme- although we've only been on it for 4 months so I reserve judgement a bit). If you wanted to check out nutrition and stuff there are tests you can get done at Sunderland Univeristy (autism research unit) to check for gluten/casein problems. We had those tests done before ds1 was diagnosed with autism.

Saker have you tried this autism online questionnaire/scoring. I found it really useful and have told lots of other people about it too. The website is:-www.childbrain.com/pddassess.html
Correct me please if I am wrong but I believe pdd is the american term for asd??? Sorry if I am wrong.
HTH

Hi BlossomHill

I just tried this questionnaire - thanks for pointing it out. I was a bit unsure about some of the answers as some seemed more appropriate to older children. The final score was 71 - possibly mild PDD.

I had a look at the Dyscovery Centre website (have you seen this?) - it has some very good info a factsheets. The dyspraxia description sounds a lot like my ds2 and there seems to be some overlap with autism in terms of the "rote" use of language which seems to fit him sometimes. But I know you can have both together. And dyspraxia by itself is not to be taken lightly.

I have finally got another appointment to see the paed but not until end of June. In the meantime he will get assessed to see if he should go through the statementing process. But I feel more positive today - every night I have picked him up from nursery he has run up to me and told me something different that they did that day and he enjoyed (validated by the carers and his brother) and it's so nice to have a proper type of conversation with him albeit on the short side.

Hi Saker, just wanted you to know that I know exactly what you are going through. My dd also scored about 65 - poss mild pd. My dd is 5 in August and has a language disorder, which I know def. has overlaps with asd, but so mildly that it isn't too much of a problem IYSWIM. Have seen many professionals since dd was about 2 and had asd ruled out although obviously, as with dyspraxia, there will/can be overlaps and some similarities.
I know lots of children with dyspraxia as my dd is in a language unit and with the right help lots of the children are doing really well!
When I think back to my dd when she was 2 she was different compared to how she is today. No speech, hardly pointed, poor eye contact and basically in a world of her own - all of which she does now. At the age of about 3 she started to make really good progress and now at the age of almost 5 is doing very well. Obviously she does have quite significant language difficulties still or she wouldn't be in the language unit. I just try and be positive and look at the progress she has made and try not to compare he to other children her age. i am fortunate dd is in the unit as I get to speak to so many parents! Anyway the point that I am trying to make is that a year in a childs life can make a difference.
I was just wondering what the paed's thoughts were?

Saker - Thanks for the link Dyscovery centre website, it was really interesting!

PDD-NOS is an american term for borderline autism- so it owuld make sense for a child with language problems to score as mild PDD. For comparison my son scores as severe on that test- and he's moderate/severe autism.

Look at this too screeningtools

Hi

Thanks for your support BlossomHill. Up until the last couple of weeks I had always assumed that my ds2 couldn't be autistic because he was loving and cuddly and then I had a bit of a shock to find that here that that is more the norm than not among many autistic children. The other thing that I hadn't really realised was about the strength of the connection between pointing and autism and that really bothered me because I remember being worried at the time about how late Ds2 pointed. I was looking at him pointing today - he does use one finger but he doesn't close the others down properly. But he has a lot of problems manipulating things with his fingers so I don't know if that is just because he finds it hard to do physically.

He does interact quite a bit - he seems to do a lot of talking to get you to interact with him - so even he has nothing to say he will look at you and "Hello Mummy", "Hello Daddy" - just to get a response. I'm thinking of requesting portage to organise a proper assessment by the educational pyschologist - I was going to wait until we saw the paed again but now that's another two months.

Anyway better go and sort out some food for the children. ds2 asleep and ds1 watching the lion king so temporary tranquil here.

Saker, I would say def. go for the ed pysch. to have a look. It's well known that the earlier the intervention the better. If your ds does need a statement then at least they have will have a good idea and as it takes 6 months it's always better to have it done asap. Good luck

saker, nothing to add from experience, but read this thread and realise how stressful it must be for you.

My youngest son was a reluctant pointer - used to hand wave more than point, or grab your hand and make you come over. My oldest son pointed a lot, so I could definitely see a difference.

My youngest son passed all his development checks, though the staff at one of his nurseries were worried about his unresponsive, ultra-lively behaviour for a while. In every way my son is 'normal' so far and he is now nearly 5. He is not an easy child for the teacher to cope with - not very keen to learn reading and writing yet, but then of course lots of reception age children are like this. I will see what the next few years bring.

When he was a slow-to-point toddler, I had no idea of the link between that and autism (didn't know of jimjams, dinosaur, etc in those far off days). It I had known, it would have worried me, even though there was nothing else to set alarm bells ringing.

Tigermoth,

thanks it's reassuring to know that the pointing thing is not automatically indicating autism. He is interested to show me things and tell me things - he never stops talking although we don't understand all of it, but his actual pointing is always a bit vague. Also he does really struggle to follow a point.

I think I should get his eyes tested but I would prefer to be referred for this than walk into Boots opticians or somewhere. I took my ds1 there to have his done recently and the test seemed to be all letters and relied a lot of the co-operation of the child which I am not sure I would get with ds2. Probably another thing to ask portage about....