DS has just had 1st paed appt - asked if we wanted to go down diagnostic route or wait 6 months - we said wait - bad idea??

[skidd]

We had our appointment with the community paediatrician this morning. Lots of questions all relating to ASD (I think), and a few tests of language/comprehension etc for DS (age 3).

Then she just said, well we can go down the diagnostic route but I'm not sure that a label will benefit him at this stage. I said, so you mean you think he is on the autistic spectrum? And she said, well he has a lot of the behaviours but he is still very young so it is up to you whether you want to pursue a diagnosis - I don't know what to think - is he or isn't he on the spectrum? We decided to wait (because she/we weren?t sure if he needed extra support atm) and will meet again in 6 months. In the meantime, she will write to his school and get a report from them. She has also asked me to fill in a questionnaire (SCQ)- which I scored (by looking at the closed middle bit ) and googled and it has him at exactly the cutoff for ASD (13/40). I went in there thinking maybe SPD or maybe I'm panicking over nothing - and came out with the possibility of an ASD diagnosis. My beautiful little boy

So another 6 months of limbo I guess. I suppose his symptoms will either get better or worse in the next year of two and then we should know either way? I go from thinking he's fine and just shy/anxious to thinking he is definitely on the spectrum. I suppose one thing is that even if he is ASD it is definitely not severe.

But any advice on what to do now much appreciated. Were we foolish not to pursue a diagnosis immediately? I'm not convinced (and I guess the doctor wasn't either) that he would meet the criteria for a diagnosis, and I don?t know what support would help him at pre-school - his main difficulties there are interacting with other children - is there support available to help him with this? Am completely clueless and in shock.

Thank you

I don't think you have really done a bad thing in waiting and OU always have the option of ringing up and being asked to be seen sooner if you feel things have changed or you have changed your mind. Perhaps you could discuss with pre school and get their view. It's very difficult being put on the spot and having to make a decision there and then I always tend to say "I'll discuss with OH and ring an let you know.." as I'm rubbish at decision making! My dd2 is also very bad at social interaction with her peers but she is not 2 yet so we have a very longggg road ahead of us!

a tough call, as you don't know whether six months will make much of a difference. but having made that call it's very important that you don't let things slide, and in particular that the six monthly review happens at bang on six months, so that your DS doesn't get left in the system until you chase him up In terms of support at pre-school - a 1-1 might be able to help with interaction, and with reducing your DS's stress levels if she can nip problems in the bud by keeping a careful eye on him. And of course do specific work with him on language and social skills. whether a DX is necessary for any 1-1 hours varies from area to area, in theory support should be needs dependent rather than DX dependent but....

I was in your position last September - ds was considered borderline (came below cut-off scores in one test, just above in another) at the age of 3.5mo. We were 'offered' a diagnosis of ASD or a wait and see approach. We took the diagnosis, thinking that it might be more useful in terms of provision of help.

In reality having the diagnosis has made no difference to what help we have had. We are on school action plus (which we had applied for before dx), and are applying for a statement (which you can do without a dx). We have had no help with anything whatsoever in day-to-day life, and the support we have had (which is laughable) we would have got anyway according to need, rather than actual diagnosis.

When ds was around 3 we were pretty certain he was on the autistic spectrum but some of his behaviour and oddities could be put down to age. Now he is almost 4 he is clearly autistic (though high functioning). Getting the actual diagnosis meant nothing - he would be who he is whatever.

The only thing that has made any difference to him has been ABA, which we started before he was diagnosed, and has been absolutely the best thing we could ever have done

Have a look at this if you can (see previous threads) and definitely talk to nursery/preschool about support strategies they can put in place to help social interaction, communication.

Forget about labels - look at how you can help your son with the difficulties he has.

Sorry you have had this shock - we all know how you feel. Unmumsnetty hugs to you (())

Thanks for your replies. TBH my gut instinct was to say, yes let's go down the diagnostic route but I thought I might sound a bit crazy - as if I WANTED my son to be autistic IYKWIM

totalchaos I will absolutely not let it slide and will be on the phone 5 months from now demanding an appointment

thanks bialy - sounds like you were very on the ball long before you got a diagnosis, and how depressing that you have had so little support. I naively thought a DX might result in immediate 1-1 but of course I am new to all this!

I am finding this difficult to talk about it with my DH. He has always thought I overplay DS's difficulties and as we left the doctor this morning, and I was in shock, he said, 'well they will never let you leave saying there is definitely nothing wrong, they would say that about almost all children' - WTF??? I said they def wouldn't say that about our DD (who is about as non-autistic as you can imagine) and he said, 'they probably would, yeah, they don't want to get it wrong' - aaagggh. I think I will leave him at home for next appointment

Right off to search ABA - have vaguely heard of it but don;t even know what it stands for - thanks bialy

I think sometimes the dx makes it a bit easier to tell other people (and for form filling purposes) and to get the right professional support. That said if there is no pressing reason (like trying to get a Statement, or access to services) i don't think waiting will do any harm either.

Oh DHs . It took over a year for my dp to see what I saw in ds. He even said things (in the early days) about it being my fault as I didn't take ds to enough toddler groups...

What is your deep down gut feeling?

No, sadly a dx does not mean automatic support. It does mean that you can, as starfishmummy said, use it for form filling but even then it doesn't always make any difference. (Eg we've just had our school application results, and ds didn't get into our top four choices, despite the first choice being brilliantly supportive for asd children, being less than 10 minutes walk away, and having provided evidence of ds's diagnosis and need )

I suppose I strongly feel that what is important is helping your child with the difficulties they face, regardless of whether there is a diagnosable condition or not. We were very lucky that I met someone who was doing ABA for her son and I found out about it - it just seemed a no-brainer to start doing something to help ds before waiting for a dx and whatever 'support' we might get thereafter.

It stands for Applied Behavioural Analysis - basically a method of developing skills your child needs (eg language, play skills, social interaction) and reducing inappropriate behaviour (eg tantrums, aggression, obsessive behaviour, echololia) through positive reinforcement. You can use it to work on whatever the child needs, and can be used as a general approach of teaching practical skills too (eg toilet training). You can do it as intensively as you like.

Let me know if you want more detail on it - or search threads on it, there are loads.

Btw do I remember you from previous threads, either here or on behaviour&development board??

the only question I would want to know is does that paed do dx?? Because if he doesnt you'll be waiting well over 6 months for a dx appointment :(

Personally I dont think you have done anything wrong, but know that early intervention shows best outcomes and 3 is a great age to start.

Skidd, was this your first appt with the paed? They are often reluctant to DX at your DS's age as the behaviours that are exhibited at that age can mean ASD or other developmental or language or processing conditions/disorders (or even borderline NT), which may be less or more serious than ASD. In six months, when your DS is 3.5 (?) it should be more obvious what DX should be made. I would be much more pushy then. Is the paed going to observe him some more in this time?

One of the best pieces of advice I've seen on here is that if you suspect something on the autism spectrum, then act as if they are on the spectrum. It won't harm them and you'll have got a headstart. Whether that's ABA and/or Hanen or something else? More Than Words is an excellant book for understanding and helping your DS to communicate (Wimslow Press, expensive!)

He's still your beautiful boy!! This six months may give you the time to come to terms with his possible DX. Use it, though, don't waste it.

excellent book, bloody late night brain..

Hi Skidd, We still don't have a DX for our DD aged 6 nearly 7 now, we really don't mind as to us the DX is not going to change anything she will still be our DD and she had 1-1 for the first year of primary school which helped her loads. I have to say she is a lot better then we thought she would be as a baby. It was always clear something was not right, it was like the lights was on but no one was home. we said we want to wait till she is at least 8 before we get any kind of DX just to make sure they get it right :) did all the tests and the doctors was maybe maybe not autism so we said does not matter see you in a few years lol :)

It is hard I mean we could never do anything even toddler swim she would just cry and cry and cry. She would not talk at all to anyone at nursery even when she wet herself she would sit in it and she still does from time to time at school. They would not listen to me till she pooped her self once and sat there in it, thats when school realized that oh she does have accidents and doesn't tell anyone (like you can't smell it) All I care about is she is happy and since she found football (whole life is about football and I mean everything) she is learning that you need to be around other kids to be apart of a team and play which is a great help to her and she loves it and as a bonus its good for her :) not like thomas the tank which is banned from our house. If I never see another thomas tank in my life I will be very happy lol.

I don't think you've done anything but early intervention is very important here.

What did the community paed say about an appt in six months time?. I would ask this person now about this and whether you can be seen before that time if necessary. I would start acting far more pushy because no-one else is better placed than you to fight his corner for him. Also no-one else will.

See a "label" only as a signpost to getting more help for your son. A dx does not mean automatic support; you will likely have to fight for it to be given to your son.

I would also give your DH a swift kick up the bum now as any denial on his part will not help the two most important people in his life i.e his son and you. He needs to pull his head out of the sand and sharpish. There can be no headroom now for denial.

Do not waste the next six months; start looking into portage services and ABA and obtaining a Statement for your son from the LEA when he is at preschool as well. All this whilst hard, is necessary. Read the NAS's website; educate yourselves further. Knowledge is power!!.

Never forget that you are your child's best - and only - advocate.

He is still your beautiful boy regardless. Focus now on helping him as best you can with his difficulties, be a strong advocate for him. This is all necessary because you will discover that no-one else will have as much interest as you do in helping him.

Re preschool I would suggest you now apply for a Statement from the LEA. You do not need a firm diagnosis to go for one of these and they are also there to help children with social and communication difficulties. Believe me all this is necessary and you need to think longer term as well. In around 2 years time your son will be in Infants. Plan ahead!.

He Leonie,

Re your comment:-

"atilla: sorry to threadjack but can you apply for stat assess before they're in school?"

Yes

wow thanks all for replies

The thing about the dx is that I'm not absolutely sure he has ASD - he has good eye contact, OK language (paed said slow but not delayed or disordered), he is affectionate and communicative at home, cognitive development seems fine, doesn't do any flapping/repetitive action type things... also his pre-school teacher seems to think he is OK. She said this morning that she thinks he's getting better and she is not too concerned..

However, he finds social interaction very difficult, has a Fireman Sam obsession, has some sensory difficulties, is clumsy/slow in gross motor development, and is often in his own world for an hour or two or more(playing Fireman Sam) and doesn't respond when called. Also very fussy about food and hates transitions (sitting down for dinner/ going for a bath etc), and has bowel problems (lack of control)

So I guess it is not clear that he is on the spectrum - or am I in denial????

bialy - yes I posted on behaviour and development and here before about my concerns - you were very kind and helpful then, just as now . Did a search for ABA but threads were a bit detailed - any links / info for 'beginners' would be great - sounds like a fantastic idea

lisa - yes I think that paed does dx as one of the things she said was: "we could go for a diagnosis but that would take up a lot of my time... (long pause) which is no problem of course" - don't know what is planned for next appt - maybe I should contact her and ask (she was actually really nice despite that comment and DS liked her because she had the same name as a Fireman Sam character )

EllenJane - yes 1st appt - I like the idea of being pushier next time. I sort of think in 6 months time things will be clearer - either he'll have settled in well and I'll be less worried or else his problems will be come more obvious

Atilla - do you think I'll be able to get a statement from the LEA if the school think he's ok?

Thanks all, this is really helpful - haven't slept for two nights - 1st one for worrying about appt, and last night worrying about his future. Will arm myself with knowledge and be the best advocate for my beautiful boy

Re the school saying he is "okay". I will tell you now that many preschool and school staff are not trained enough to recognise ASD or the whole gamut of special educational needs. The paed can actually diagnose and in your case this person has suspicions that your child could be on the autistic spectrum.

There is no reason at all why you should not apply for a Statement to the LEA and even if your request is rejected (and you do not need school's permission to do it) you can appeal.

Ok, so you have, for now, put a diagnosis to one side, so stop worrying about whether this is the right thing or not. What matters now (whether you had a dx or not) is helping him with whatever difficulties he has. The dx itself doesn't make any difference - he is still, and always will be your beautiful little boy

You say: "he finds social interaction very difficult, has a Fireman Sam obsession, has some sensory difficulties, is clumsy/slow in gross motor development, and is often in his own world for an hour or two or more(playing Fireman Sam) and doesn't respond when called. Also very fussy about food and hates transitions (sitting down for dinner/ going for a bath etc), and has bowel problems (lack of control)"

With my ABA head on, I'd say:

Social interaction - you will have to teach him that it's much more fun to play with others than it is on his own. That he will get more rewards from playing with others. This has to be step-by-step. Start with adults and familiar peers. Create games with others where he has to join in to make it fun for him. Hide-and-seek, chase, tickling games, etc (if he likes physical stuff). Prompt him to ask for more, and eventually prompt him to join in with another game. Get as many playdates as possible, as many opportunities to be with peers as possible.

Get nursery to start a small playgroup with him and 1 or 2 other children, using an activity that he likes - say he's playing in sand table, get 1 or 2 other children to play alongside, and make it as fun as possible when the children are playing together.

Fireman sam obsession - the quickest way to extinguish this is by ignoring it. Not that it'll happen overnight by any stretch, but it will happen eventually. So, when he starts talking about it, ignore it, talk over him about something else. Be really animated about the alternative subject. Limit time with Fireman Sam to 15 minutes daily, then reduce gradually. Use visual timers eg sand/egg timers for this. Tell him the 'rule' beforehand - "ds, you can play with fireman sam for x minutes - when the timer goes off, it's time for dinner/whatever". Give 5 minute countdown "ok, 5 minutes till timer", then "2 minutes till timer", or whatever suits you.

You really must talk to pre-school about support there - this is crucial, particularly if social interaction is the main problem. They should be at least putting him on school action, and applying for school action plus. And asking for help from the LA early intervention team.

ABA - Catherine Maurice Hear my Voice (? might be called something slightly different) is good for parents. Robert Schramm Educate Towards Recovery great on ABA/VB techniques, but a bit full of terminology. Will have a think about other info sources - bit late now but will try and come back to this thread!

homeboys - that's a good idea - don't think it would annoy DH too much, and I do need him on side.

bialy - great advice, thanks so much. I think I am already doing a lot of the social interaction stuff but haven't tackled the Fireman Sam obsession yet. TBH the though of restricting it so hugely terrifies me. Well terrify is a bit strong but he would not be happy to put it mildly. Part of me doesn't want to restrict it as it gives him such comfort - he definitely gets more obsessive the more anxious he is. But then I guess the point is to teach him to manage his anxiety in a different way? Will try ignoring initially (we do sometimes do this anyway - hard not to) - and if he talks about something else be really enthusiastic about it.

This morning when I dropped him off at pre-school he actually went of his own accord to play with two other boys!! He has NEVER done this before - it was to play Fireman Sam but still... (they even call him Fireman Sam now )

Well, if you decide you want to try and get rid of the obsession, prepare yourself as (from my experience) it might not be pretty... He will almost certainly get angry, tearful, tantrummy, and possibly worse. But if you are determined to do it, you have to ride it out.

The worst thing you could do is try and ignore it for a couple of days, let him tantrum and tantrum, and then give in because you can't stand it anymore. The message he has got from that? "Ah, all I have to do is have really bad tantrums and eventually they'll give in". So, only embark on it if you really are sure you can see it through.

The other thing is that you must really, really go to town on providing something that is more fun than Fireman Sam. Whatever that is - special treat, activity, time with you, whatever you think he loves more than Fireman Sam! Definitely sounds like you're doing well in praising and giving lots of attention when he talks about something else - keep it up! He needs to see that he can have loads more fun, and still feel safe, doing something other than Fireman Sam. And you're not taking it away completely, just limiting the time.

You're probably right, he uses it as a safe retreat as it is so familiar, and a comfort for anxiety. Which is why you (and pre-school) also need to be looking at ways to improve his communication. I really noticed when ds got to about 3 or just over, that his anxiety really increased. I think now that it was because suddenly the level of communication with his peers took a leap in sophistication which he couldn't deal with as he didn't have the skills (language/communication). ABA is teaching him this, and everything else is improving because of it. He does still have anxiety but his social interaction has improved beyond what I would have thought possible at this stage.

I understand your concern that retreating into fireman Sam is comforting for him - but if you can provide ways of reducing his anxiety (eg through communication), or other more appropriate ways (eg playing with you, jumping on trampoline, whatever) the obsession should decrease.

ABA is expensive and a big commitment, but I really would recommend you look at it. And in the meantime Hanen worth looking at too. Once communication improves everything else will too.

Useful books (about Verbal Behaviour strand of ABA):

The Verbal Behavior Approach: How to Teach Children With Autism and Related Disorders by Mary Lynch Barbera, a Board Certified Behavior Analyst and parent of a child with autism, and Tracy Rasmussen. One of the few parent-oriented books about using Verbal Behavior to teach communication, speech, self-help skills, potty-training and more.
I haven't read this one but have heard it's great for a newcomer to ABA!

Teaching Language to Children with Autism or Other Developmental Disabilities by behavior analysts Mark L. Sundberg Ph.D. and James W. Partington Ph.D., who have researched Verbal Behavior and helped popularize it through their articles and books.

Educate Toward RecoveryEducate Toward Recovery: Turning the Tables on Autism by Robert Schramm, a Board Certified Behavior Analyst. An easy-to-read teaching manual for parents who are new to the concepts and language of Verbal Behavior. He includes information on children who don't respond to conventional ABA methods, and on how VB can be used along with the Relationship Development Intervention method.

thanks bialy, I don't think I'm ready to tackle Fireman Sam directly yet, but will try to deal with his anxiety/communication and hope that will help. I think you're right that if I really really push other things and make them really fun, that will distract him from Fireman Sam. It is just quite exhausting and full-on, especially when you have 2 other children (1 and 5) to look after as well. We have also been conscious that our DD (5) has been feeling a bit neglected recently and don't want DS's difficulties to always come before her needs. Oh this parenting is so hard sometimes [sigh]

I also had a really useful chat with a good friend who does autism research, and she was very positive about DS and thinks he is probably not on the spectrum but rather is taking longer than most children to grow out of NT toddler behaviours (rituals, sensory stuff). Nevertheless, she thought that learning more about ABA was a really good idea.

Thanks for the book reccommendations - will try the first ones for starters

That is great your DS's social interaction has improved so much must be so gratifying after all your hard work/dedication

Hi Skidd most of my DD problems was communication/anxiety when she was younger. There is something called selective mutism maybe you could look at that ??? my DD got her 1-1 for that reason and its not a label for life like the autism can be :) they still get the support they need :)

I have to say when they did the tests on my DD at age 3 she scored up to age 6, she then got bored with the tests after that point so she understood everything but just elected not to speak at all when she was out of her home setting, there was also a lot of other things. She still has anxiety issues hence the not wanting to tell the teacher when she has wet herself and everything having to be done right homework straight after school football every tues with out fail.

My family feel its probably higher functioning autism but the DX will make no difference to us. Should point out we have a lot of autistic and mental ill people in the family and my father was/is psychologist :) You also have to remember that everyone and I mean everyone has a least one autistic trait.

yes I understand what its like having other children I have 4 children altogether DD 11 with ADHD, DD 7 nearly 8 with chronic brittle asthma spends a lot of time in hospital. DD 6 nearly 7 which is the one thought to have ASD, and DS 5 who has possible congenital heart disease (going through tests now). You do have to try and make a little time for them on a 1-1 parenting side of things I know its hard work but even if its just once a month where you go to the park or play a game :)

good luck and if you ever need to talk I am normally always online somewhere :)