does this sound like it could be ASD?

[kyz1981]

Confused about my Son Behaviour issues, My son is 21m old and we have had concerns about his behaviour for a while, would love advice from mums that have experience as I have no clue - thinking ASD but well meaning friends/HV have said hes Probably not as he smiles and gives affection and plays peek boo.
I am struggling at the moment because we are no-where near a DX more in a wait and see state and he is getting harder work the older he gets- just looking for any insights from mums that have been here and any wisdom as everything is just so stressful and hard work atm, I have a 3yr old to look after too and have very few friends that live nearby who I can Rely on and others who think and say its just a "boy thing", I really would not worry he seesm fine to me " or he will get there in the end". I have friends who won't even bring him up with me as they feel we are over anxious parents and he is just fine! -

I am awear that he is only very little and some of the behaviours I have listed below fall in to the normal toddler behaviour, my main concern is his lack of understanding/response of receptive language with out any visual clues.

He has been assesed by an OT privatley and has some sensorys issues and we are using the intergrated listening program with him and a sensory diet.

He has had 2 audiology appointments, he is so inconsistant in these that he had to have 2 audiologists look at him as you can't make head nor tail of his issues but they have discharged him as they feel its behavioral due to his speech.

pediatrics is concerned and asked auidology for ABR Test but have not heard anything yet, she seemed to

have a 15 minutes SALT assement on monday - how they can asses a toddler in 15 mins is beyond me, but need it done.
The problem being no proffessional can make head nor tail of him- they all agree there are clear issues but he is so inconsistent.

Does not respond to his name 95% especially when not at home , does
not look up or acknowledge understanding of his name,or anything to be honest.

Does not acknowledge coming to 'Mummy/Daddy' when verbally asked,
but will come if looking at you and make a open armed gesture.

Appears to be in his own world at times (almost like he can only
focus on one thing at a time and his ears are shut off to the world)
will not turn to locate sounds visually, like the telephone ringing,
his sister dropping a plastic toy on the woodern floor, does not a
acknowledge someone entering a room won't even turn his head, even if its someone he does not know.

does not startle not even a eye blink to loud sounds (hand claps behind him / loud voice/drums) - does not flinch etc - appears 'deaf' this is more true if there is other noise in the room, lots of voices, music tv on he acts completely deaf and will not always respond to things that usally get a reaction.

Tended to not have prolonged eye contact this is more true with
people he is not familiar with, getting better last few weeks as we try
to engage him more

Very unstable and clumsy on feet - started walking 7 months ago and
still 'appears drunk' when walking although this has improved over the
last month- little to no response to pain from bumps and knocks.

Very 'sensitive' around face especially the mouth - hates water over
hair, can't put a hat on him or cover his head with anything, hates
baby wipes around mouth - sensitive in that he will scream the place
down, can't go near his ears, Hates many textures- has only
just started exploring water thanks to the OT and is reluctant to play
with mud, if he does get any substance on his hand he will eat it
(foam, mud,poo )

Will use my finger to point to things rather than his own.

Does not 'share' or 'show' you his toys, does not want to bring you
anything- this has improved will now give me some of his NG toys and
there will be a back forth passing.

Needs to look at you to get a response, loves routine but is not
rigid with it, He now needs to hold night garden things if he leaves
the house, goes upstairs, comes down stairs and in the buggy, he won't
let go of these and if you try and take them gets very irate and upset
and you are unable to calm him unless he has them back.( these can be
meaningless bits of broken night garden puzzle, fuzzy felt, ripped page
of as long as long as its night garden it does not matter what he holds).

Does not respond to verbal requests, even simple ones, however when
shown visually he gets it almost instantly.

Seems to have poor body awearness - ie does not to point to his
nose, mouth, eyes but will point to my nose when I try to engage him in
Head shoulders, knees and toes.

Ben can say, 1-10 numbers- these were his first words,No, Daisy, Iiggle, Hahoos, Ponitpines, ponk, nonky, pakka, pines, bridge, book, shoes, mummy, head, mouth duck, quack, chickens, and is starting to repeat words he hears even when he is another room.

Quick to get fustrated and very stubborn likes things on his terms
100% if not usually results in a tantrum screaming.

Will always holds a spoon the wrong way up struggles to feed
himself and gives up. does not know if he is left handed or right handed.

waves so that his palm is facing his face as that what he sees, the
same with pointing to body parts he will never point to his own but
will point to mine and his sisters. he mirrors- if you get what i mean.

understands very little although he will recognise single words in a
sentence, eg if you say "Go and fetch your cup" he will understand
the word "cup" but not what I want him to do with it. His vocabulary

is increasing quite quickly- single words mainly repeated words from what I have said.

Ben seems to like jumping and will often jump up and down for quite
a while, he also likes spinning walking on tip toes and standing on
objects on the floor for example if there is a box on the floor or a
tray, Ben will have to stand on it.

will spend ages copying night garden characters dancing spinning
and is incredibly animated when this is on.

when in the supermarket, will spend a lot of time with his head
arched back looking up at the lights, but if he has sun light on his eyes
in the car he gets upset.

Thanks so much if you got to the bottom of this.

And would be appreciative of any guidance tips from mums of what services I should be fighting for to help my son.
& Apologies for my spelling its not my strong point.

I think the problem is that proffs are very nervous of Dxing a child this young.

They seem to prefer a wait and see approach.

Having said that there are people on here who's children were Dxed at a young age and I am going to be working a LO who was DXed at 2.4.

Sorry if that is not much help.

I would keep a diary of any quirks/issues/unusual behaviours, what caused them [if you know] and what you did afterwards[to show consisitancy]

Good luck

Hi, i have 2 dd's on the autistic spectrum, your ds sounds very similar to how dd2 was at that age (only big difference being speach as dd2 had no speach at this age). It sounds like you are doing all you can at the moment (you are doing a fab job at pushing for a dx), dd2 was diagnosed at the age of 3, she was referred to pead after her 2 year check up. We kept getting told 'to wait to see if her speach improved before dx'.

I think for now you should carry on with the OT (OT has been a huge help for us and the listning programme has made a huge difference), see what SALT says but they may want to see him again in 6 months time to see if theres any improvement (as he's still very young).

You could look into things like PECS (as he seems to be a visual learner and pictures may help him to communicate more).

Silly question, but has he had his hearing tested? If hearing isn't a problem then I would also be concerned if I were you. My DS2 was DXed at 3.6 with ASD and this was quite an early DX. TBH, your DS sounds a lot like my DS was, except your DS has more speech. He used to live to copy action songs from the TV and computer games were an early hit. He jumped up and down (still does) when excited, flapping his arms from his elbows. I wasn't as aware as you seem to be and I was mainly worried about his lack of speech. In retrospect, he had many red flags.

I found More Than Words a very useful book, which I wish I had bought earlier. May be worth getting while the profs make you 'wait and see' as at least you will be getting on with some intervention.

Sorry, re- read your OP and see he is baffling the audiologists.

Thanks for the reply's! Yes when we took him to the gp the gp referred him urgently for hearing tests, in the first test he responded to some sounds then spent the rest of the test feeling the wall and standing near the door, however when the Audiologist was banging the drum, Ben did not even look, they tried this three times and he did not look, startle or blink, he then said that this was reflex action and a brain stem response ( the blink) and said he would expect to see it if it was a processing disorder. He then made an appointment with him and his boss for a months time, ben again responded to some sounds and said the word Duck- the audiologist then stated she had never heard a child that could not hear say the work duck so clearly and discharged us- she could not explain the lack of blink response when pressed and simply shrugged her shoulders!]

However as his speech has leap in the last few weeks admittedly almost all night garden words, ever gazebo! and Mummy for the first time I can pretty much rule out hearing problems.

I just want to feel that I can do something to help him and be able to explain to nursery's what he needs as I want him to go to one, but I have yet to find one that I feel like he will be included in, as when I mentioned Special needs to my daughters nursery the worker seemed really unsure and uncertain- I have worried ever since.

Its just getting much harder now he gets older, he is getting more picky, I have to give him sandwiches or cheerios without milk for breakfast, he is getting more frustration by the day and I never really know what the matter is, I can't tell if he is ill unless he shows physical signs, I just want some support for him and me I guess as I feel like I am in limbo.

But I will keep a list and get that book, I have tried signing and some pictures but he is not interested at the moment- only in milkshake Music box and in the night garden- oh and Peppa - but only when his sister is around.

Hi kyz,

I doubt any of us here is qualified to dx ASD - it can sometimes be a very hard thing to dx as the signs can be quite subtle.
The idea that children with ASD don't make eye contact and sit in the corner in 'their own little world' is a myth.
No two children with asd are the same though.

My ds makes brilliant eye contact, loves cuddles/physical contact, interacts with adults really well. BUT has a total freak out if another child tries to interact with him in any way.

You could google 'CHAT' test (Checklist for Autism in Toddlers). This is a simple test designed to show what children are at risk of developing autism. But to be honest, I had to stop googling 'asd symptoms' as I was sending myself mad.

You are doing absolutely the right thing to be looking at getting you both help though if you're at all concerned. The earlier the intervention, the better the outcome.
Many kids with asd can be taught things that NT kids seem to know how to do - for example pointing, eye contact etc. It sounds like your ds is very teachable so that is very positive.
As is the fact that he's speaking (my ds had only one word until he was 2.6yrs).

Just to warn you, the waiting lists can be pretty depressing. My ds is 2.8 years and he's been 'in the system' since he was 18 months and he still hasn't got a formal dx. We've been seen by a ped twice over the past 12 months (as part of the 'wait and see' process I suspect) and have been told the waiting list for the formal assessment is at least 6 months in our area.

When you have your SALT person on Monday, ask about portage. We have a lovely portage lady who comes round once a fortnight to play with ds. She shows us games to help with things like his 'joint attention', turn taking and trying to introduce 'flexible play' (my ds does everything on his own agenda).

On the subject of nurseries, do you have a Sure Start nursery nearby? My ds attends one and they are amazing. He's on something called the 'Two Year Programme' - this identifies children with developmental delays/concerns and gives them three free sessions a week.
My ds has a LSA and although it's taken us a long time to get him settled, he loves going to nursery now. They are so supportive and it's been a life saver for both of us as I get a bit of a break and he learns to build relationships with other people. He still doesn't interact with the other children but at least he can be in the same room with them now without screaming his head off!

If you want your son to attend the same nursery as your daughter though, you should ask if they have a SENCO (special educational needs co-ordinator) and make an appointment to discuss your ds.

sodry kyz you are going through this.

i have a 4 year old with asd and a lot of things you describe sound familiar.

but as you said, your son even baffeled the audiologists and i think it would be really important that any hearing issue can be ruled out. maybe worth mentioning an ABR hearing test to your paed?

oh, just re-read you post and saw that paed wants to go down the ABR route. if you haven't heard anything back, probably worth chasing the relevant department.

Hi thanks so much for the info, The pead would like the ABR but she informed me they can't dictate to other departments so she wrote them a letter, I will chase this after his SALT app on Monday.

We used to attend an additional needs group run by Portage but I now have no child care for my Daughter on a weds (nursery refuse to help as weds is busiest day there) so we have not been for a while.

He has been assessed for Portage and is on the waiting list, but this is quite long.

Ben would Fail the CHAT :( the only thing that makes it less clear is his speech, when he was around a yr he lost the two words he had for about 4 months, then seemed to make a massive leap forward and gained more words ( however also gained more behaviors)- before this you would be lucky to get him to look at you and he would just sit playing with one toy for hours.

We don't have a sure start nursery, there is a special needs one near us but Ben is to young and the HV thought he may be ok in a mainstream one with additional support and to try this first, he will only be going for two sessions a week to start.

I will look up the two yr program that will help, I don't want Ben to go to my DD nursery as my first impression of a member of staff when I mentioned Special needs was not great- you could see her physically recoil.

I will ask at my daughters nursery id they know of a local one that has a senco and if there is and I get a good impression then I will move my Daughter there as her nursery is good but so unhelpful with Ben, He has a melt down pretty much every time I drop her off.

I have tried Ben at most types of groups and TBH its a nightmare because he either melts down because they are to stimulating or gets hyper runs round and really injures himself.

One thing I really noticed is there is very little provision round here High Wycombe for children with additional needs.

Thanks again for all your replies I now feel like I have the start of a plan with nursery's which is a big help, as was worried sick that no-one would want to take him.

He sounds very much like my son - DX with ASD at 3. DS had two hearing tests done - the first was a disaster, the second was better and they dx high frequency hearing loss but wanted to test again in three months. I wasn't convinced and neither was my paed (he was at the second test) and we decided to go for the ABR as it would be more accurate which was done on the childrens ward at the hospital. DS hearing if normal.

Please push for the ABR if you are not happy.

Hi I will push for an ABR as I requested one at his first Audiology appointment- as I knew Ben would be a nightmare. I am going to email my requests so that there is a paper trail, I will do this on monday as I really want to see what SALT say in the 15 min slot -(is this a normal time for an assessment- when the pead requested an assessment I had visions of an initial 35-50 minute appointment), Depending on Bens need I may see if I can get some private SALT for him too.

His Next Pead appointment is in Sep, so I will also see if its possible to book in a MRI and any other tests.

On the plus side have made an appointment to view a nursery that Has strong Senco links so thanks for all the support feel much less tearful and less stressed now I have some sort of action plan.

Sadly it is a matter of waiting for all the professionals to pull their fingers out and get things done.
He sounds a lot like dd2 who was referred at 2 and giving working dx and a full dx at 3.
We were very lucky to be able to pay for a specialist private autism nursery but only because of DLA.
You know your child and don't worry about other mums, I don't talk to any of the old baby group lot as they didn't know how to talk to me and they disappeared when things got tough.
Keep pushing, yours his best chance of early intervention. you could look at a BIBIC assessment, that was wonderful for dd1 when we were waiting for her professionals to kick in.

Also meant to say - it may be worth ringing your local council and asking for their 'Family Information Services' department - they can advise on nurseries, services available for children with additional/complex needs, help with claiming DLA etc. Mine have been brilliant.

Unfortunately it seems like what help families can get is a bit of a postcode lottery. And how hard you're prepared to fight. It sounds like your son has a great mum and you are doing the very best for him.

I didn't think I would ever be able to find a nursery who would take my son or get to a point where I could actually leave him there without me. It took us three months but we got there.

I sometimes find it overwhelming - coming to terms with having a son who is 'different', coping with his challenging behaviours/meltdowns and fighting for help and support. I try to take it one step at a time and focus on what practical steps I can take to help him now - not worry what the future holds too much. It is hard though.

Hi Thanks I will do the above. To be honest I have known something was wrong from when Ben was about 10 months old, At xmas he shut down and regressed losing words, eye contact and interest with pretty much everything, this was when we freaked and fell to pieces as we had no-idea what it meant for us as family, we had all these stereo types in our head of how he could be mainly based on things we had read on TV and Adults in residential I had worked with whist being a student. My husband coped better than me through this period and was my rock.

Now I have time to digest that there is something not quite right with Ben and come full circle Autism, Hearing now something def developmental but what only time will tell, I am in a much better place to deal with it as I have done most of the grieving, what ifs and what not and just decided to take small steps and see where we end up.

The hardest thing now I find is the struggle with everyday things, like teeth, hair, getting him dressed, food but mainly that most of my Friends that I made when my Daughter was little have distanced themselves and when I do see them they never even ask how Ben is - I think some of them worry about upsetting me or just feel relieved its not them and rush off!, however my close friends are great and a big support.

I just want to say thanks again I am overwhelmed by the support and I advice I have received on here and I am very grateful.