New - looking for advice on son

[dekra]

Hi everyone I am new here and was looking for some advice/recommendations regarding my 3 year old son.

 

For over a year my husband and I have had suspicions that our sons problems combine to possibly be something within the Autistic Sectrum.

 

His speech is very very behind although in the 7 months since he started nursery school it has inproved. He will be 4 in August and he has only recently started putting sentences together, even then the ones he does use are learnt/mimiced he doesn't make independent sentences. He has only recently started to learn that other people have names. This is a big step forward for him as he does not mix very well with other children. He plays along side them not with them IYSWIM. Mostly he likes to play in a wee world of his own however. He understands basic instructions but you cannot have a conversation with him. Even at nearly 4 he mostly parrots back to you which in itself is progress as last year he didn't even parrot.

 

When he was a baby he wasn't a great sleeper or a bad one. Just what I guessed was average. After 7 months he went into his own bedroom and was fine until he was 19 months when he woke screaming one night. After that we had him in bed with us for 13 months then progressed to having him in his own bed but in our room for another 10 months. During all this time he would wake in the night frequently terrified and upset. Speaking to the health visitor it was put down to night terrors. January this year we tried to move him to his own room once again and with the addition of his own TV. Finally he has a good bedtime regime, happily goes to bed at 8pm and if he isn't sleepy will watch tv, when he wakes in the night as he still does at least 2-3 times he calls me (I am a very light sleeper) and all I need to do is re-arrange his covers and pop the tv on low and he settles back down. This has been a welcome relief to us all.

 

With his serious lack of speach his toilet training was seriously behind, but we got that sorted soon after this 3rd birthday.

 

Other things that concern me is that although in many ways he is a smart little boy there are basic concepts he doesn't grasp. Put him in front of a computer and he can play Mahjong but he doesn't understand basic social factors like boys and girls. When I mentioned names earlier he has started to call other children by their names but their parents he generally calls them by their childs name also or calls them Mum.

 

He likes rituals but not to a crippling extent. He likes to have set things he will say to you then you must give the expected reply so he can again give his next set reply. If you don't say your part of the dialogue there can be hell to pay.

 

Getting his teeth brushed has always been in issue. For a long time he would not allow the toothbrush into his mouth then later he has become obsessed with brushing his teeth and we now go through 3 or 4 brushes a week. I need to hide the brush and paste after he has used it but I have to distract him first to prevent a tantrum.

 

Finally after that first night he woke screaming he developed a problem with noises. He will scream and hold his ears at various noises. The local chip van that blows a whistle to annouce it's arrival in the street, the noise in a large echoy public place like the swimming pool. I tried taking him to Disney Live last month and it was a disaster. Another childs birthday party was a disaster. He gets very upset and cannot be consoled. It is not just loud noises. In our local Argos there is a conveyor belt that rattled quietly, nothing more than white noise but it results in the hands over the ears and whimpering. Hand dryers in a public toilet are a huge problem. Depending on the noise he can almost completely become rigid and will not move or only move if it is away from the noise. On more than one occasion one of us have had to pick him up to get him someplace he can't hear the noise for him to settle down. He has had his hearing checked for both this and the problems with his speach.

 

He also has obsessions with yogurts, likes to count things repeatedly (other than Mum and Dad his first words were numbers and he was counting into the teens by about 18 months old) and prefers to play in things that have more of a sensory imput such as water/bubble or on the computer/ds rather than with normal toys.

 

He has attended speach therapy once and was supposed to be reviewed last year but staffing issues has meant that is only happening next week now. Since he started nursery I have met with his key worker, and educational psychologist twice and he has another review due early next month. Whilst there has been improvement there is still huge delays in his development.

 

I think that is the majority of the issues we have with him. What I wanted to ask was does this add up to a possible ASD? If so what sort of things should I be asking the psychologist when we meet again and how would I go about asking for him to be tested? Am I just paranoid or does some of what I have said her sound like it should be investigated further?

Edited April 22, 2011 by dekra

[Robert Hickman]

Yes it could be a milder form of autism, like aspergers. But ask yourself this, does it really matter if your son fits perfectly into the pre-defined social norms? He is obviously good with computers, so give him the freedom to learn through that avenue. The other issues will rectify themselves as he grows older and begins to observe the world more, they did for me anyway.

[dekra]

Thanks Robert, no it does not matter to me or his family that he fits the mold but I just want to be able to help and support him as best I can. What I do want is to help him become that happy little boy that he was as a baby - the last 2 years have not been good for him with lots of broken sleep and many frustrations and tantrums mostly to do with his lack of communication skills.

[oxgirl]

Hi dekra and welcome,

 

You're obviously very concerned about your lad and it's good that you have some appointments and assessments coming up. What do the staff at nursery say about your lad, are they significantly worried about him?

It does sound as if your worries are being taken seriously and hopefully you'll get some answers soon, which could lead to extra help and support for your son as he goes through school, if it's still needed then.

From what you describe, it does sound as if there are some aspects that could point to an ASD. Have you started reading up on the subject? Will you raise your concern about ASD with the Ed Psych or wait to hear what their thoughts are first, there would be no harm in raising the question.

I know it is a worrying time for you and your husband and hope that you can get some answers and support soon.

 

~ Mel ~

[dekra]

Thanks Mel. There has been a bit of a time getting help for him. When I first approached the health visitor with concerns almost 2 years ago he was refered for hearing tests and speech therapy. Due to the hospital cancelling the hearing test and my own health issues (very bad second pregnancy) and waiting list time it took almost a year for the hearing test to be done (all was clear) and the first speech therapy appointment. He was due for speech therapy review in November but due to staffing issues that is only happening next week now. The health visitor also refered him to the Early needs nursery but he was refused a place due to insufficient needs (priority is given to kids with parents with social issues not kids with developmental problems).

 

Once he turned 3 and started regular nursery school they picked up on his speech right away and asked permission to refer to educational psychologist. I have my 3rd meeting with her in 2 weeks and this is why I have been researching ASD as many of the things he does makes me think he may be effected and the more I read the more I can match things to the triad of impairments. The nursery not only picked up on his speech but were querying his comprehension when you speak to him. This bothers me at times too but I also know he understands more than he always lets on - think that's typical for any child however. Once the nursery key worker had gotten to know him a bit better she now agrees whilst his comprehension is not always there it's not completely absent even when he doesn't let on he understands.

 

Reading some topics on this forum have rung yet more bells. There are also somethings that people seem to mention regularly about children on the spectrum that are not issues for my son. No lining things up or major problem with changes to daily routine being the two that stand out. I assume that not all aspects are there in all types of ASD. The more I think about it the more I am going to ask the school and educational psychologist, because if he does have ASD then getting diagnosed and finding out where he sits on the spectrum might help me understand him more so I can anticipate new issues that might arise rather than learn to deal with them blind as I have been so far.

[oxgirl]

There are also somethings that people seem to mention regularly about children on the spectrum that are not issues for my son. No lining things up or major problem with changes to daily routine being the two that stand out. I assume that not all aspects are there in all types of ASD.

 

That's correct, not all ASD children will present with the same behaviours and some are not apparent when a child is young but will come out more as they get older.

 

Have you seen your GP about asking for a referral to a consultant paed., who would be able to assess your son for an ASD? The nursery could also request that an ASD outreach professional come to the nursery to assess him if they are concerned.

 

~ Mel ~

[dekra]

That's correct, not all ASD children will present with the same behaviours and some are not apparent when a child is young but will come out more as they get older.

 

Have you seen your GP about asking for a referral to a consultant paed., who would be able to assess your son for an ASD? The nursery could also request that an ASD outreach professional come to the nursery to assess him if they are concerned.

 

~ Mel ~

 

I am just waiting on the Dr's surgery to open back after lunch and I am making him an appointment. I had thought the Educational psychologist would have been the better person to approach but the more I read the more it seems the GP should be first port of call.

[bid]

Welcome to the forum, Dekra

 

You could also ask to speak to your local Special Needs Health Visitor, especially as your son is still so little...they are usually a fund of information and support, and can also refer to other appropriate professionals.

 

Bid

[dekra]

Thanks for the reply Bid. Sorry this is the first time I've had a chance to reply myself I've had a hectic couple of weeks and son's sleep has been very distrubed again so mine has too.

 

I've spoken to my health visitor who is reffering to the community paed and I have an appointment to see GP next week and HV says he will refer him to the hospital paed so things are moving.

 

We have more words and they are getting put together independent a bit more over the last couple of week so he is making progress. Small things but they give me hope. I still want to pursue a closer review for him as I still have huge concerns.

[dekra]

Thought I would just update this thread a little.

 

My GP did a referal to the local CAMHS but they rejected the referal and sent it back to the GP to advice that the referal should have been made to the childrens assessemnt, diagnosis and treatment service. It was only when I chased things up I was told this and my GP didn't bother doing the re-referal so I had to repeatedly call and push fo rit to be done. After a couple of weeks when the GP's surgery insisted they had sent it the records office at the assessement centre actually called up chasing it for me and got them to refax it directly to her.

 

The referal will now by reviewed by the panel next Thursday where they will decide how to proceed.

 

At the time of my last post my son had started to wet the bed at night and have accidents through the day despite having been dry in the daytime for 8 months and at night for 7 month with only 1 or 2 accidents in all that time. Now suddenly I have a boy who is almost 4 and back in nappy pants. The GP's have treated him twice for suspected infections but his samples always come back as clear. One GP recommended star-charts as it is probably behavioural. Unfortunately my son has not the slightest interest in or appear to understand the function of a star chart so we are back at square on, reminding him to go pee-pee every half hour. Not having any issues with his bowel thankfully, he always goes to toilet for that. We are wondering if he has maybe developed sensory issues that is dulling his sense of needing to go for a pee.

 

I am very frustrated, still having broken nights again, got an unhappy child and despite being 2 months down the line from when we asked for a referal we are not much further forward.

 

I should be starting university in September as a student nurse but I don't know if it's the right thing to do at the moment with so much in our lives unknown.

[baddad]

Hi Dekra -

 

very quick reply on the toileting... I don't think a 'star chart' is ever a bad idea, but as you say it is/will be pointless if he doesn't connect the two things - toilet and starchart - up. It's worth persisting with, I guess, if you can help him make that connection; maybe you could put the star chart (if it isn't already) on the toilet door, or print off some cartoon toilet 'stars' (I bet you could find a good toilet pic to nick on Dav Pilkey's 'Captain Underpants' site as one of the books is 'attack of the talking toilets') onto avery label sheets...

 

My son just cracked toileting by the time he went into reception, and I know many kids struggle in this area. For Ben, it wasn't that he didn't 'pick up' the signals, it was that he didn't pick them up until it was too late. Toilet training was achieved more by back-chaining from '10' which meant 'I am going to go now', so that he became aware of the signals at 8 or 9 (I would literally ask 'do you need the toilet?' and he would say 'no' and I would say, 'what number' and he would tell me... I have some lovely video of him on holiday sitting and eating his breakfast and I say 'do you need to go for a poo' (he was wiggling) and he says 'no... oh, yes... and gets up and goes to the loo! I LOVE that clip!

 

The 'out of ten' thing became a key tool he adopted as a means of expressing himself for several years, applied to all sorts of things from how bored he was to how much he liked a particular food etc etc, and was certaily a big part of understanding body signals for things like toileting.

 

HTH

 

L&P

 

BD

[dekra]

Another little update. If nothing else it gives me a record I can look back on myself.

 

We've got the toiletting issue mostly resolved. He's back out of nappy pants and going to the toilet during the day again, we are prompting him especially if he is out playing to make sure he doesn't forget and have only had one accident in the last week. He's still in night time nappy pants though and only dry about a half the time. As he had so many months dry at night I'm still unsure if the problem is physical, psychological or behavioural but I'm happy with his progress.

 

I have an appointment for an assessment on 24th August, by which time he will have turned 4. I feel relieved things are out of limbo at last.

[dekra]

Baddad - I like that "out of 10" idea. At the moment he wouldn't understand the concept but I will definately file it away for future use, thanks.