Am I being paranoid?

[maddiemo]

Hello
I have a five year old son who has autism.

I would like to ask advice about my youngest son just turned two. It sounds silly but I don't feel able to voice my cocerns to any professional yet.

Anyway, youngest son has around thirty single words and a few learned phrases "sit down", the phrases sound a bit singsongy and repetitive.
He understands "put wrapper in bin" "give it to mummy" so I think his comprehesion seems ok.
He sometimes lines things up,cars and shoes mostly. He does play with his cars normally as well. Sometimes he handflaps. He did not point until 19 months and I feel that I taught this rather than him learning it spontaneously, at 22 months he began to point in the environment. My autistic son does not do this.
He has a very limited diet,mostly milk and like my autistic son has dropped down the growth centiles from 91st to 2nd.
he is showing some distress at change. He won't wear his winter coat and gets very distressed when I try to put it on him same with shoes. A couple of times he has got distressed when we have changed direction or taken different route around park. He enjoys playing with light switches.
I really don't know if I should be concerned or not. His personality doesn't seem autistic, but I know that everyone on the spectrum is different.
He seems to like other children but is still a bit young to play with rather than alongside. He will lift a teacup to his lips to pretend but doesn't yet elaborate on this.
Any advice welcomed. Sorry this is such a long first post.

Maddie

my son has just turned two and he doesn't like change either at the moment. Hates having his winter coat on and obsesses about it until he can take it off. I just thought he was being a typical two year old as lots of my mates kids are the same. Your ds2 sounds like he is doing well speech and language wise too. I wouldn't worry but I know it's hard when your eldest is sn, like mine

Hi! I write VERY long posts....so this will be short! I have ds1 ADHD and Asperger's and i have a 7 yr old who i'm sure will turn out to be 'far more Autistic' than ds1- I can identify with how you feel 'paranoid' and how frustrating it is- if you want to read more of our individual experiences and thoughts by using the seach option on the site and it allows you to seach an individuals user name- if you read mine (they are usually long posts!!!) - you will read loads about handflapping,change,food,etc...which i have like you been aware of since he was 2 - however for me this has got worse (as is typical in Asperger's ) in the past year

Hi maddiemo- how far along the spectrum is your 5 year old?

Your ds sounds very like my ds1 (now 4- autistic) at his age (although with far more speech- and he's learned to point a little bit earlier- my son started pointing in the environment at around 26 months- although he still doesn't point that easily iykwim).

Does he interact with other children or copy them? My autistic son has always liked being around other children but tends to ignore them. His NT younger brother (22 months) will follow other children, watch them, copy them and try and join in with their games.

Did you teach him the teacup thing? My ASD son could also do that sort of play by the age of 2- for example he would pretend to give a doll a bottle. Hid play was quite stilted though- hard to explain but his NT brother will actively seek out things to play with all the time. ds1 was less interested.

Have you tried a casein free diet? You can get the urine tested at Sunderland and they're pretty good at telling if milk is a problem. Sorry if you already know this, but let me know if you need more info. (If milk is a problem and you remove it form the diet you will usually see a change within days- so you only have to trial it for 3 weeks). Removing gluten from my son's diet did make a big difference, and removing peanut butter made an amazing difference- he's very affected by diet.

Sorry not to be able to say "sounds like you have nothing to worry about". I think you are right to be concerned. If I was in your shoes I would probably contact Sunderland and get a urine test done (its 60 quid- but they do provide a free service if you can't afford that). I would also start to seek out diagnosis- is there anyone you can contact through your eldest son?

maddiemo- btw- I wouldn't worry about things like lining up etc- it't the lateness in pointing that worries me more. (It was the first sign in ds1 really so I obsess about it). I watch NT kids all the time with their pointing and they seem to start at about 11 or 12 months. How easily does he poiont now, and does he use it to draw your attention to things (you know a kind of "oh look mummy there's a doggy" tyoe point - even if its with no words).

sorry if me saying nothing to worry about is belittling, didn't mean it too

yes it is soooo hard at that age to distinguish 'odd play' from 'normal play'- ie DS2 'lined up trains' and had to have them in certain orders etc- however to a point trains are desighned to be lines up...lego is perfect for lining up....the list goes on- and i agree about the pointing thing- even now at 7 and 9 ds2 aand 1 findit impossible to follow my pointing- i phisically ahve to turn their bodies and even with ds2 i have to hold his head at the right angle to see things...and as far as their pointing out to me- well i usually get pulled and told where to look- the only pointing i remember at a young age with them is ds1 pointing when he noticed something- but i can now see that this is leagues away from ds3 pointing to share something with me!

fio2- what you said did not sound like you were trying to belittle this feeling- more that you wanted to reassure! This paranoia is catching Maddiemo- actually i am an expert in being Paranoid...i think a better word would be 'concerned'- you just love your boys!

Thanks for all replies.
JimJams my five year old is not high fuctioning but nor is he severe. He attends an MLD unit attached to a mainstream school, he has been there just over a year and has made great progress. He fits the passive autistic type. He does have language around the age three mark, but it is disordered. I can ususally work out what he wants. His pronunciation is clear the words themselves are jumbled. He has comprehension of around 2 and a half years. He losses his comprehension when stressed and in say a shoe shop can't understand the asisstant saying "stand up" etc. Is your son at school? How is he coping?
Yes I did teach the teacup thing.
The late pointing is a worry, my autistic son was picked up by an audiologist for this and echolalic languauge.
Mrs fogetful Thanks for advice to follow a persons posts. He does follow my point, this started at 23 months. He points to planes in the sky and says "plane".
Fio2 don't worry. The problem is that a lot of these behaviours are typical two year old. With my autistic son I was so reluctant to voice my concerns that he was almost three by the time he was picked up and then we just hit constant waiting lists. Diagnosis waiting list 2+ years and where I live there is no statement of SEN for autism without their in house diagnosis and even then due to cutbacks maybe no statment for HFA Aspergers.
JimJams Have you done Earlybird. We did and I found it really helpful.
Maddie

phew, glad I didn't offend

We did do Earlybird- it was good, although would have been a lifesave the year before iyswim.

DS1 is passive as well, although he has a more severe language delay than your ds1 (he understands nouns and set phrases and not much else). He also has a severe speech problem (verbal dyspraxia maybe?) which means that when he does talk he is totally incomprehensible to almost everyone (unless they've learned his language). He has just started a mainstream school- he goes for 2 and a half hours 3 days a week - with full time one to one support. he also goes to a mainstream nursery for 4 sessions (again with one to one). Touch wood it all seems to be going well.

How much access does the MLD unit have to mainstream? (sorry I'm being nosy- we have an autism unit locally but its not very well organised- the person who runs it is a bit unstable, so I'm always interested to hear about places that are successful).

Would you be interested in trying to fiddle about with his diet (not always easy of course ) It's just your words "He has a very limited diet,mostly milk" jumped out at me. Before making ds1 gluten free he would only eat bread and cheerios (literally). Removing peanut butter made a huge difference as well- I've written about it before on here, but when he was eating a lot (he slowly upped his intake iyswim) he would headbag anything hard about 20 times a day. He had permanent forehead bruises. Within 2 days of removing the peanut butter he was normal again (well normal for him). Diet works well for us, although I do have friends for whom its made no difference.

Thanks for replies.

Just to let you know I have the following children;
ds1 10 nt
ds2 7 nt
ds3 5 autistic
ds4 2 nt I think
ds3 was at a mainstream nursery for a while, but he is very routine bound and finds change very hard. If the sand tray had moved in the room it would be enough to make him distressed for the whole session. He spent more and more time on his own unable, to move from one activity. He also had problems if the children were too loud or too near him and started biting.

His unit is excellent. They are integrated for assembley, playtime,lunchtime and any school event. They are a full part of the school life.
It's only in the classroom they are different. There are 10 children aged 4 to 7. They all work their own differentiated curriculum. They use PECS and makaton and the children work in small mixed age groups dependimg on ability. There is a lot of emphasis on social and play skills. The SALT comes once a week although she has to see a lot of children 30+. We have a lot of different units where I live and from what I hear the standard is variable.

Your ds1 mainstream school seems flexible. Our mainstream schools do take asd children but really only those at the top end of the spectrum.

We had ds3 urine tested at Sunderland it came back positive for gluten. He spent about a year on a gf diet. It seemed to make a difference in the beginning but after a year we reintroduced some gluten with as yet no ill effects.
I think you are right it may be a good idea to send a sample of ds4 to Sunderland, it may show a casein problem.
Thanks maddie

sounds like a lovely place maddie and I'm glad he's doing well there. My dd goes to sn nursery ,it's a phsically disabled school now but when she started they used to take children who are on the autistic spectrum - alot of them are still there, and it's a brilliant place. She absolutlety loves it and although I had my reservations about her going there, it's the best decision we made for her. It's just a shame there aren't many places like it - we are moving soon but I don't think it looks likely we will get the same.

maddie- agree about your point that alot is typical 2 yr old behaviour- but also the wait once proffesionals agree that 'things are not quite right'- My HV said that alot of ds2's prbs are seen in other 7 yr olds- and if not some of what he does won't raise any medical eyebrows until he is 9.I feel part of me just waits and let time take it's toll- but another part says 'NOW'!!!!

Sounds a good place maddie. The school is flexible- DS1 is a bit of a learning curve for them though as they've only had AS before. They seem to be rising to the challenge (thank god- as none of the local special schools are really suitable).

How does your ds4 compare with your NT ds's at his age? They're probably the best comparison iyswim.