hi everyone help and advice needed

hello everyone i would really appreciate peoples thoughts and advice regarding my 3 year old son,as i am worrying so much and i need help and support.

i am very concerned he is on the spectrum somewhere and would like to go through what his behaviour is like to see what people can advise.

he is currently going through CDU and has just finished a 3 day assessment with a multi disciplinary team and i find out in 2 weeks what they think and do a report. i have brought up autism concerns more than once and i feel i am not being listened to. i think they are going to come back that he just has a general delay with his speech being the main issue.

this is my little mans behaviour/habits etc

he was born normally, however he has very badly webbed toes (his left foot is severly affected NOT the normal webbing people have. because of this and his other issues he has had genetic testing which came back clear. it dosent affect his walking he has coped fine with it and still is.

he didnt babble as a baby. when he was about 1, i can remember him saying "thank you" very clearly. and ever since then, he seems to have regressed. he didnt talk at all or say much and when it got to him being about 18 months i knew something wasnt right. his speech is now a BIG issue, he cannot talk properly or say words properly, he has his own little language and ways of saying things, cannot say C T F S letters properly. i can understand a lot of what he says but others cant.

he has funny behavioural habits, he likes lining things up, especially cars, and if someone takes one out of line (especially his older brother who is 5) he has meltdowns. he also seems to like sensory thinggs to look at and often gets things up close to his eyes and moves them across his eyes. he also loves beads or anything  he can get "locked into" doing for more than 20 mins at a time. he also likes dropping things off the corner of the sofa, although not done this for a while,

he likes to have 2 of everything one thing in each hand all the time e.g 2 crackers 2 biscuits etc.

he hates change,this is a BIG thing and has got worse recently.... if we go a different way home from school or anything diff he really has full on screaming, and its so hard, everyone stares at him, he wont listen to why or reason why we are going a different way, also if we go somewhere different or a change of plan, same thing happens.he also growls at people and scowls if they look at him when hes in the middle of one of his tantrums Frown

he dosent sleep at all he is still like a baby, fussing and waking up, its a nightmare. ive not had a full nights sleep with him for months and months, very very rare. he is on melatonin to help him sleep it helps him go to sleep but not stay asleep. this was given by his consultant at the CDU recently.

socially, he seems to be ok, he does play with other children but more alongside them, dosent go to join in much... if that makes sense, not with them. he often plays on his own, at home if his brother is outside doing something he stays in lining cars up or doing his own thing. he is very very cuddly and clingy still, and he has to hold my hand and twiddle my palm with his thumb to get him to sleep(im trying to get him out of this but its just so hard atm Frown ) he also gets too overly affectionate often licking me when we give kisses etc. his eye contact is good but one of my friends said he seems to look "thru you" which since she has said i have noticed, he has gorgeous bright blue eyes but they seem glazed at times really distant when he looks at you,

hes still not potty trained or shows no interest, ive tried a few times no success. he just happily walks around with a soiled nappy on until i realise, sometimes he does tell me if he has, but mainly still he dosent

he dosent like loud noises and covers his ears, this is particularly noticable walking down to school when big buses or trucks go past

the main issue i need to ask is, can children with ASD behave more for their main carer, like a comfort thing. as his dad is constantly saying he "dosent do this for me" etc, but his dad dosent live with us, he lives 40 miles away, and one of my friends told me her little girl with aspergers was exactly the same, played up for her more, like a comfort/home thing???? at home it is a nightmare, the habits, the ocds the screaming at change etc. the other day he had a meltdown over my new tv because it was different Frown also his older brother loves tormenting him constantly at him all the time, its so hard right now Frown Frown

also he dribbles loads still, always wetting his tops through it

he is at nursery and they say he is doing fine there and they dont think he has an ASD but again is it the main carer thing is it habit or is it all meaning something? im just so lost at the moment with all this its really stressing me out Frown Frown Frown

im hoping for some answers when we go back to CDU in 2 weeks but i really feel we wont. i know it is very complex and hard to diagnose but i just KNOW something isnt right with him, and so many things make sense from what ive read about ASDs...i just need some help Frown

any advice would be much appreciated. thank you xxxx

  • well an update on the situation here, 

    fins 3 day assesment they have come to no diagnosis of autism and they think he is a very "complex" anxious individual who has delays in gross and fine motor skills self help skills and the main issue being his speech. they told me not to worry about ASD as they dont think he has it because he is social. Well im sorry but from what i have read on here and online lots of ASD children ARE social but in different ways, but from whats going on at the moment with him, its prooving that he isnt that social when it comes to interacting with other children Frown 

    i am still not happy with this and just recently his behaviour has got worse so ive had to ring CDU and the health visitor again Frown Frown Frown Frown Frown 

    an example of what hes doing now on a daily basis, especially around other children is growling at them and roaring at them, or if someone (adult or child) speaks to him he just roars at them, we took him to a christening at the weekend and he did this to all the children that were there, and then sat on his own and lined cars up (that we had brought from home) whilst his older brother who is 5 happily played with other kids who were there and interacted

    hes having full on meltdowns over walking a different way home from nursery, 

    im having a real time at the moment and its causing me a lot of stress as im a single mum and im finding it extremely hard to cope with Frown Frown Frown 

    is anyone going through the same thing or can offer any advice and reassurance. I still feel like im not getting listened to, his dad is no help either and is just in denial that anything is wrong Frown 

  • Thankyou for your replies...intenseworld it was a full check for anything and everything....he def does have red flags some of them more obvjous than others....i have videoed him a few times....

    I know something isnt right ive worked with children in nurseries since i was 18 and knew from him being very young after about age 1 something wasnt right him not talking etc

    Will wait and see what the outcome is from cdu...and take it from there xxx

  • If he is having a multi-disciplinary assessment already, that does sound like an ASC assessment.

    Was the genetic testing for a particular condition or set of conditions as if it wasn't a full genetic testing then they could have missed things?

    Have you tried videoing him as they will sit up and take notice of his autistic traits then.

    He has enough red flags for autism to pursue this with doctors.  If the CDU doesn't take you seriously you could go back to your GP and ask for a 2nd opinion referral elsewhere.

    Unfortunately some areas are behind the times and I have heard of children getting diagnosed at 2 years old but some insist it can't be done until they start school - which is rubbish, so tackle them on their attitude.

  • If you feel there is something wrong than just keep fighting for the correct diagnosis.

    You boy sounds a lot like mine (he is 4 now)

    Since he was born I just knew something was wrong with him, but everybody kept telling me I am overreacting etc. I didnt give up as I knew he needed to get help. After 2 years of battling, one doctor agreed to do genetic testing on him, and surprise surprise he has a complicated genetic condition and heart condition than no one picked up on (how bad is that?) than after that he underwent more testing and assesments and was diagnosed with ASD and is currently undegoing tests for ADHD too.

    Just dont give up, I had to go to about 12 different doctors before one took me seriously.

    Good luck and I hope you get him the help he needs.