confused regarding assessments/observations(sorry very very long)

hi peeps, i am a "newbie" and i am getting very confused by what we are being told.

 

at the age of 2 we were told by health visitor that our son had a mild speech delay.  he was viewed again 6 months after this by another health visitor and she felt the same.  we in the meantime had been seeing a paediatrician and reported our sons other difficulties:-

from small he has not liked sleeping with any blankets sheets etc on. he always and still does wake in the night and bangs vigorously against the side of the cot. he was originally in a cot bed(wooden) but he chewed the bars so much that they became weak. he also ate the large splinters and stored some in his cheeks. he has been in a travel cot since 6-7 months. the sides are softer when he bangs. the old cot bed mattress is down the wall side as it pads the wall and stops qyree from hurting his head when he wakes and bangs. at bedtime qyree likes the same toys but very often throws them out in the night. when we put them back they must be given to him or put back in in the same order. he prefers the same person to do certain aspects of his bedtime routine. if we don’t he gets upset and distressed.  he is now back in a cot bed with bars and doesn't chew but still bangs/rocks.
 
he had 5 large seizures over the course of 4 months with one lasting 9 mins. he also had two in the same day(this second one in the same day was after we had been sent home from the hospital). the feeling is(by medical bods) that these are not an issue as he had or developed a cold close by. however for us there is a family history of seizures. his older sibling had larger seizures(relating to an apnoea attack?) with follow up absence seizures and all but one of the seizures had a cold nearby.

He likes to eat all sorts of things egg shell(when we were trying to pretend play), sand on the beach, hair etc this has not been as prevelant however we are more aware and watch for this.

he bites his finger/thumb hard when anxious or upset/angry.

he rocks(on his feet forwards and backwards) when there is music on or he is anxious.

he is very sensitive to touch when changing his bottom. he is sensitive to noises like a fan(electric), hoover, cars when we are walking(he has a hat with flaps over his ears as he kept using his hands and crying when walking along.

he gets distressed if we have walked a particular way and he cannot walk back the same way.

when he had a cold and needed his nose wiping he would get quite aggressive and would run away. the speech and lang therpaist suggested setting an alarm for him. this worked very well but the alarm would be used 2/3 times to avoid too much reliance.

he is very strong, when he was having test after the seizures four of us had to hold him down to allow the doctor to take any blood. when taking the blood for his most recent testing i had to hold him very firmly(wrapping my leg around him and arms. he still managed to break the needle and consequently they only managed to get 2 vials instead of 3. if he hurts himself he is very aggressive and needs sitting on someones lap(mine or hubby) so he calms down.  he will be quite agressive and hit/punch/kick.

when he was at speech and therapy group(regular) he didn't like to play with the other children much but this develops more when only one other child is there and this child is quite passive and doesn’t invade our sons space too much. at nursery it is reported that he play alongside the other children and he regluary tells us he has played by himself.  generally he doesn't like to interact with other people that he doesn't know or like.  at home if we have a visitor he will hide under his small dinner table.  at nursery if changes occur or he has to move from his classroom base he will become difficult/aggressive and will hide again.

he loves water activities. he loves jumping off of things or bouncing/rocking on things. he loves banging/rhythmic items.

he can be very clumsy at times as though his body is ahead of his brain to process his actions he has had a few accidents and at his speech group he has had 2 accidents resulting in accident forms and a 3rd with no accident form(no head injury). he will sit well in a buggy but if he is allowed out of buggy he will run everywhere fast and doesn’t stay at any area for long he seems to bounce every where.

THE QUESTION:- the slt from the cdc has been and observed him at nursery, viewed videos of us at home.

 

she has said that from what she has seen(good eye contact & communication with FAMLIAR people and apparently one child at nursery, when playing with the teacher whom he likes, too) that he doesn't have autism as he shows good signs of interaction/social communication.  she also said that he doesn't have ASD either. she explained that ASD was autism but of varying degrees.  all the little bits of eye contact and social interactions would rule this out.

whilst she is a specialist.  the paed, slt from speech group, speech therapist from health clinic have all reported how my son behaves in a group the last two people have seen regulary first hand how he would not engange with the other children, join in for sing time, sit all together for snack, line his bricks up, on his own agenda etc etc.

these professionals through their observations have all been indicating and pushing down the asd/autism road and now this one professional after a 3 1 hour sessions and 30-45 mins at school makes a judgement.

we are confused as to what else it could be and are certain that unless nursery/school has something concrete they would not help him.

we have had the ADOS test and are awaiting the results however during the test he needed lots of direction and guidence from the slt.  during the section of the birthday party the slt asked him to give the baby a drink(she had a cup with a pretend drink)  he went for the cup with actual blackcurrant in to give to the baby.  when the slt spilt the pretend drink she went oh dear and a=handed my son a piece of kitchen roll and asked him to clean it up.  he didn't do this on his own.

 

all very long(very sorry) and all very confusing.  does anyone have any ideas where we should go from here.

p.s. my husband is on the autistic spectrum but his difficulties do not cluster to give a firm label.  he has good eye contact and is sociable with direct family.

 

thanks

Catherine

Parents
  • thanks guys.  the ados test results are middle of jan but i was watching how the test was conducted and i am fairly certain it will be no diagnosis.  the support group i am attending all have children that have been through this cdc and they all have been told that their children are fine.  the children have diagnosis' now and are getting support. 

    we will fight if we need too but the upshot of it is, is that the school already are struggling to deal with his behaviour(meltdowns about leaving the class to go to the hall) and other things.  we have strategies in place at home that work and i think before too long they will want something sorted for school but until the teaching staff help they will be stuck.

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  • thanks guys.  the ados test results are middle of jan but i was watching how the test was conducted and i am fairly certain it will be no diagnosis.  the support group i am attending all have children that have been through this cdc and they all have been told that their children are fine.  the children have diagnosis' now and are getting support. 

    we will fight if we need too but the upshot of it is, is that the school already are struggling to deal with his behaviour(meltdowns about leaving the class to go to the hall) and other things.  we have strategies in place at home that work and i think before too long they will want something sorted for school but until the teaching staff help they will be stuck.

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