Confused and worried mum of 23 month old..
Posted by
Josie Barnshaw
on 26th June 2010
at 11:11
Hi Mel
Welcome to the forum :)
What age is your son? Are there any professionals involved with him at all? If not, it might be worth asking your GP for a referral to Child Psychology. My son is now 15 and was diagnosed with Aspergers when he was around 7/8 years old but I was also told when he was around 3 that he was too young to diagnose, but he did have input from the Child Psychologist for the two years or so before he was assessed and the Child Psychologist's reports formed part of the multi-disciplinary assessment process. It might also be worthwhile asking for a Speech and Language Therapy referral.
In the meantime are there any particular issues that you want to address with your son?
Josie - Community Champion
Posted by
damo73
on 26th June 2010
at 11:42
Hello Mel,
From the sounds of it your son may well be autistic - yet 'don't panic' as Hitchhiker's says - my son was diagnosed aged 2 and is 'classically autistic' - he had/has many of the traits and behaviour patterns you mention. My son went through a period of 'regression' and lost many abilities (he has begun to regain some - he is now 7 and goes to a special school). The regression was unfortunate - however - autism is not a tragedy, as some might have you believe (although if your son is autistic, your life will no doubt be very different to what you might have expected - in my opinion - hopefully for the better).
My son came to live with me three years ago (and now sees mum at weekends - so kinda swapped over from the early years). I would say that my son being in my life, is by far and away the best thing that has ever happened to me - he is the happiest little boy I know, my best friend, my light and soul. I am also doubly biased, as I was diagnosed with Asperger's last year, yet look on the bright side - you may have a uniquely gifted young man - he may not interact with you much, yet when he does, it will be all the more valuable - you and he may need support along the way, yet this forum is a good place to start!
Damian - Community Champion
Posted by
bumblebee
on 26th June 2010
at 12:22
Hi Mel,
Welcome to the forum...I am mum to 3 children on the spectrum aged 4, 12 and 14. I am sorry, you are right, we cant say if he is autistic or not although I can totally appreciate this is what you need to know right now so you can start moving forward. Only a professional can diagnose and multi-agency is always the best so his needs can be fully identified and planned for....It would be unfair to suggest that he is autistic, although we can offer you our expiriences of our children and how they have developed.
One thing I can tell you without any doubt is that every person on the autistic spectrum is very different with skills, differences and difficulties in every area so its hard to say that he will follow this path or that one....Again, not very helpful! I think the best thing you can do right now is to read as much as you can and learn as much about autism as possible so if your suspicions are correct, you havent missed any chances to learn about your son. When you read things explaining autism, try and hold onto the parts that make sense to you and fits with your son and try to ignore the stuff that doesnt relate or make sense...as I said, they are all so different.
There is a fab book called playing laughing and learning with children on the autistic spectrum and the details are in the books section on this forum.....whatever your son's diagnosis, these games and activities will help him develop and help you to learn how to get into his world gently and at his and your own pace.....
You mentioned traits and will they get worse/better/stay the same...This is something you need to discuss with the proffessionals too really as they need to assess your son fully and try to identify his skills and strengths so they can find a way to work on his weaknesses....again, all children on the spectrum are different. My oldest daughter was like a little old lady when she was young and very advanced, my 2nd didnt move until she was about 15 months and had speech difficulties and my youngest son regressed at 15 months, lost all his language and a lot of skills, but is now 4, he is chatting away, reading, writing and is doing really well. My friends son also regressed at 15 months and lost his language but is 17 now and is still non-verbal. He is profoundly autistic (so they are opposite ends of the spectrum) but he has his own set of skills, is a very happy young man and has a lovely character which comes across without any words. Her other son was non-verbal until he was 7 and is classically autistic but has language and lots of other skills too and again is a fantastic young man and a real pleasure to be around....As you can see, they are all so very different and progress at different times and different rates and have different skills.
I know these are not the answers you are looking for right now, but if you try and focus just on your son and what he needs, what makes him happy and how he best progresses you wont go far wrong....Hopefully you can get together with a good professional soon who can answer some of your questions but in the meantime, if there are any particular issues you would like to work on or need some advice with, please do ask....
Claire - Community Champion
Posted by
Leanne
on 26th June 2010
at 13:24
Hi Mel,Welcome to the forum :)One thing I found helpful with my step sons was to accept the fact that they are 'differently abled' .. not disabled. They are both on the spectrum, the youngest more classically autistic whilst the eldest has Aspergers. Both of my stepsons learn very quickly, they just learn differently to 'typical' children. Like alot of children on the spectrum my youngest is a visual learner and he has severely delayed language.. he began to talk at about 18months but regressed to nothing and then began saying words again at about 5. He is now 8.5 and we are getting sentences out of him.. we still have a long way to go but we are getting there.He has started acknowledging both myself and his dad as well as his siblings.. this is a major thing. He will say hello and goodbye and give hugs etc he will also ask for hugs and kisses.Another thing I found useful was for the areas my sons struggle with to half their actual age and this will give the developmental age... so for Alistairs speech even though he is 8.5 he has the speech of a 4yr old ish but he learns as fast as an 8 yr old. I found this helpful when deciding how to parent Alistair and what my expectations would be.. it also helped me to buy the right sort of toys and to decide appropriate books and programmes for him.If you have sky there are some really cool programmes on the Baby tv channel.. I found Brainy baby really useful, Alistair responded really well to the music and images.When he first came to live with me Alistair had really poor eye contact and a terrible tummy .. we started him on good bacteria tablets and those combined with a typical diet sorted both of the issues out. He will still not look at me if I am saying something he doesn't want to hear but responds when I say ' look at me'.One more tip .. when Alistair was non-verbal he took comfort from routines, not rigid ones kept to times but routines with in activities... ie bedtime always follows this routine even now - tidy up time, kiss daddy goodnight, toilet,teeth,pjs, change calendar and then straight to bed. His toilet routine was the same.. toilet,wipe,flush,seat down,wash hands.. Even though he was non-verbal I would always tell him what was going on.. over time he associated the words to activities.Leanne - Community Champion
Posted by
Mel C
on 26th June 2010
at 13:37
Hi Josie,
My son is 23 months, he has been watched since he was just over a year old when I mentioned to the health visitor that he wasnt babbling or really making any sounds. We had a lady come every other week to try and help him and kept bein told boys are often late speakers. He did progress to making some sounds and now makes lots of noises as he plays. In January this year the health visitor did a test on him ( think it was a caf?) which he failed miserably in everything but physical skills which were ahead of age and she referred him to a paediatrician at the hospital and they referred us to portage who have been coming for a few months now. We saw the dr in April and he said although he has red flags he was too young to diagnose and referred us to speech and language and also OT for his sensory issues. We are due to see the dr again in September . We saw Speech and language in May and shes going to see us again over the summer, hopefully to actually do some therapy, she mentioned in her report that he would benefit fom seeing the social communication team who ever they are and we are on a waiting list for OT.
So there are quite alot of people involved and they keep saying how good it is that he has been picked up early but I dont see why because nothing seems to be bein done. The only help we are getting regularly is portage who are trying to introduce picture cards to get him to communicate.
My biggest issue I think is what to do if hes being repetative or doing something which I think is a stim? Do I stop him and try and keep him occupied every second of the day or do I leave him to it if thats what he feels he needs to do? I just dont know the best way to manage his behaviour and he isnt very easy to get involved in an activity that he doesnt want to do. I feel helpless some days just watching him do the same things over and over and dont know the right thing to do.
Thanks, Mel x
Posted by
Mel C
on 26th June 2010
at 13:50
To Damo and Leanne,
Thanks for your kind words and believe me I think my son is amazing and I definately dont take anything he does for granted, any little look or smile at me means so much. I have a special needs daughter too so I know the joy that these special children bring, I just feel overwhelmed with trying to do the right thing I guess. Leanne, what you said about routine is so true for Luke, he understands words like bath time, night nights, in the car, chair at dinner time and even takes us to the stair gate at bed time! Anything we say everyday really. He responds to 'come here' but will come whoever you are calling as he doesnt answer his name. He will give hugs on request and spontaneously sometimes. He is happy in his own way. Thanks Mel x
Posted by
Mel C
on 26th June 2010
at 13:58
To Claire,
I think thats what I find so frustrating that anyone on the autistic spectrum is different because you cant get any answers on the future. The children all seem to be diagnosed at different ages to so I get frustrated that it will be ages before we get answers for Luke and get the help he needs. I am reading loads on the subject and will definately get the book you recommended for some ideas. Thanks, Mel x
Posted by
damo73
on 26th June 2010
at 14:21
When it comes to stimming - I would certainly not try to train out such behaviour (to do so is more to conform to society's standards than doing him any good) - my son's mother tried this with my son for a while and he turned from a lovely passive person, into a very frustrated and angry thing, who occasionaly tried to bite her due to this. Stimming is really an escape into something pleasurable or relaxing. It may be an anxiety thing, in which case you need to look at the environment at what may be making him anxious. Stimming may get in the way of structured learning activities, so maybe keep favourite objects to stim with as rewards (although I am not a 'reward' fan per se). My son used to do a lot of stimming, yet this has reduced over the years. I also stim quite a lot, yet in ways that people are less likely to notice - e.g. fidgeting with small bits of paper etc. in a pocket, or playing with a jacket zip. It can be comforting in a tactile way and helps me focus and block out unnecessary external stimuli.
Damian - Community Champion
Posted by
Leanne
on 26th June 2010
at 14:28
Hi Mel,
With Alistair and also his brother I have found that they are reluctant to do anything unless they 'see the point in it'. So something I worked on really hard was getting them to do things when I asked them.. whether they wanted to or not. Alistair has responded much better to this than his brother lol.
If I wanted Alistair to do an activity I would set time aside, make sure I was up for a battle and then introduce the task.. the very first thing I did with him was a jigsaw... oh my goodness what a performance. We were sat on the floor, with him between my legs I was holding his hand doing the puzzle, me being bright and positive all the time.. he was struggling ,shouting ,not happy but we finished it.. at the start I only did one of those a day. the rest of the time he pretty much just did his own thing.. he soon got used to activity time and we progressed from there.
So I would recommend doing a development appropriate task every day but keep it gradual and simple, always making sure you have the energy to complete the task.
Leanne - Community Champion
Posted by
Mel C
on 26th June 2010
at 15:43
Hi Damian,
Thanks for the advice about stimming, thats what I have tended to do really, just left him to do things unless it might hurt him such as watching a kitchen draw open and close repeatedly. Luke has had many a trapped finger as he loves to watch things move as he opens and closes them over and over. Im not even sure this is a definate stim, I just know he loves to do it and can get very angry when you stop him. He does more obvious stims like twisting his hands fast in front of his face and almost constantly flicks his fingers. Thanks again, Mel x



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Posted by
Mel C
on 26th June 2010
at 10:05
Hi everyone, Im Mel and my youngest child Luke is more than likely on the autistic Spectrum, he hasnt been diagnosed yet as we were told he was too young when we saw a doctor in April but he has many red flags for it. Such as no speech, he leads us by the hand to tell us what he wants, doesnt answer to name, doesnt point, very poor eye contact, doesnt clap or wave bye, loves anything that spins like wheels, there is just so many! Hes very obsessive about closing doors, his poor daddy comes home from work expecting a big hug and Luke runs past him to close the door lol We try and see the funny side to some of his behaviour as it is quite upsetting to see your child walking the same route of the room or garden over and over instead of playing or him barely acknowledging your existance unless he wants something. Sometimes he seems such a happy smiley boy and I just for a second think perhaps it isnt autism but the more I learn about it and watch him the more convinced I become that it is.
I have had concerns about Luke for so long now I just want to know for definate so that I can help him achieve everything he is capable of, I just dont know how to do this at the moment. Ive always felt Luke was different to my older children, both girls, but everyone kept saying oh hes a boy there so different to girls.
I feel I have kind of accepted he is autistic, it just seems obvious most of the time but I worry hes going to get much worse. This time last year, it wasnt as obvious and hes started doing many autistic looking things over the past year so I worry what he will be like in another years time! Does that make sense? Is autism like that? Im sure I read somewhere it comes out more between the ages of 2 and 3! I just worry he will become even more in his own world I guess. Also, I know you cant diagnose him but does he sound autistic from the small bit of info I have given you? I'm sorry Im rambling now, im just so pleased to have found this group to learn from and share experiences with, thanks in advice to any replies, Mel xxxx