Child with ? HFA / AS (long, sorry)

[3Trees]

Hi all, I am really new to this site so bear with me, and I'll try my best to put all this accross, in the hope that someone out there will be able to help me.

DS' school have flagged that they think he may have HFA / AS, as he has some problems at school (he is 3yrs (months, and was at preschool - will be in nursery). EG, he WILL NOT participate in creative play, won't paint, doesn't pretend (apparently he will role play, after a fashion, but it's a VERY repetitive, basic fashion, without imaginative input) he can read a story, and likes to see the words and what they mean, but he can't do the same with pictures, he cannot imagine things based on a picture iyswim. He also becomes very absorbed in what he is doing, and can be quite nasty with the other children if they try to take a turn.

he is VERY advanced at reading / spelling, and also counting / sums and numbers. They ahev also flagged however, that he has poor fine motor skills (he doesn't write / draw at all well, could absolutely not draw a basic face etc - although I note he can draw a "J" with a felt pen - not with a pencil, he doesn't apply enough pressure. He could no way even vaguley get close to doing up or undoing a button etc)

He also gets VERY upset at changes to routine, if something is not done the "right way" etc. The class had a magician party as an end of term treat, and I was the only parent there, as they asked me to be there in case he got distressed at a magician, who, by definition does things you won't expect. He loved the "party" but the magician, as predicted made him cry.

He IS sociable, and recognises if someone is sad or happy. But he is often unsuccessful with his attemmpts to be friendly, either he may be TOO friendly, or the small people are not really interested in the kind of things he likes to do, and often wander off / push him away.

He is obsessive, eg, if I tell him we'll go out at half past 12, if it gets to be 12:31, he'll start full on meltdown, screaming etc etc. He askes EVERYONE, strangers included what NUMBER house they live at (he has to know this about everyone). he also likes to know how to spell things, LOTS of things, LOTS of times. He won't eat "mixed up" food either, although we had a breakthrough last week and he ate sandwiches at a party. And so on...

But he is very young. Is it worth, on the strength of this getting him referred and going through the reportedly arduous process of seeking a dx?

I don't want to put him through that if he may just need to grow into himself a bit more and these things are minor, (he is an only child, so I don't really know what is normal and grow out of able iyswim?) but equally, I don't want to ignore their concerns and do nothing if he would really benefit from my doing something.

Sorry this has been such a long post, just after some advice really.

If he does have hfa/as then the sooner he is dx'ed the better, some of the things you decribe can be indications of an asd but you need a professional to see your son. You are obviously worried so why not make some notes about the things you have mentioned here and go and talk to your health visitor or Gp about them.
Hope that is some help.

Thank you, I never would ahev imagined this was such a contraversial thing, but I can certainly see why it might be now!

it makes me so sad, things like the magician, where every other child there was laughing and squealing with delight at teh surprises and tricks and he was just sobbing his heart out because something went "wrong" (he especially hated that silly thing they do when they give a child an untied balloon and it shoots off accross the room)

And some days he is exhausting, things like not being able to walk past an open gate without closing it, NO MATTER WHAT I say / do, or if a bus or train is delayed and we are going somewhere, or even if a stranger will not tell him their house number, etc etc etc.

I think maybe I am a bit dim, because I just thought ALL 3yr olds were like him, now I am seeing that maybe they are not.

No you're not dim! I had no idea that caring for my DD1 was different from caring for any other child until I filled in a DLA form and was awarded mobility and middle rate care. That made me feel like I'd gone round with my eyes shut for years but in reality we do what is necessary for our own children and that feels normal to us.

There are different schools of thought on diagnosis as Starlight says. You need to be aware that getting a dx and then a statement for your DS could take around a year from start to finish which would bring you to around the time that he starts school. You need to bear this in mind if you have concerns about how he will cope in the school environment. Would it be better to have support already in place for him? He'll get some without a statement if he needs it but the type and amount could be very variable.

Oh and that year would only be if the dx process went smoothly. A dx can take an awful lot longer if the professionals feel anything is unclear.

The statutory assessment process itself often takes around six months.

Thank you so much. I didn't know any of this!

I am going to take him along to the clinic today, and see what the HV says, (she's only there on a thursday)

It may be a better place to have a "chat" than the GP and we can see where to go from there?

I also struggle because I have made mistakes in talking about DS before, on www forums, asking "can your 3 yr old do x..." so I am wary of seeming like I am pushing him etc (people just told me I was boasting, but all I wanted to do was find out what is "usual" - since my assumption was that everything he does is "usual" - people couldn't see the down sides just only heard the "my child reads and counts to thousands and does sums" NOT the "my child can't use buttons, or walk past a gate, or be surprised, or understand non literal language - Can't say "If I were you" for example - he just tells me that I CAN'T be him" or, and this one he overheard, "I nearly died of shock" - threw him into a complete frenzy of worry) or, my child doesn't bring home paintings, or my child cannot draw a face etc.

I am very anxious and am planning to take a few minutes to make some notes. I hope that will help

Lx

I find that it helps to take notes of your concerns including concrete examples to appointments. I struggle to remember the significant events when actually having the discussion because I feel stressed and end up giving examples which could be interpreted as normal behaviour.

It also helps to have the conversation without your child there if possible because you can be more open about your concerns without feeling like you're putting them down.

Good luck.

This is all great advice.

We went through similar with my ds. I put off dx for 18 months as I felt that I wanted to give him a bit longer (also an only child) and since he has speech issues I wanted to ensure the behaviour wasn't down to that.

The paeds etc didn't like it and presumbaly thought I didn't want to face the truth. Well maybe I didn't. We got ds some SALT and a great deal of the frustration he showed has just disappeared but the 'odd' behaviour stays. Am expecting a formal dx in a couple of months.

Ds's school seem to think that the dx will bring hoards of Autism outreach people in, like a SWAT team to help them. Well, erm, no, I'm a teacher and in my experience the dx brings little with it, and the outreach help they expect will not be forthcoming or will be generalised beyond belief. But hey ho, I'll not burst their bubble yet....

We got a statement for 25 hours a week and fortnightly SALT sessions as well DLA without a dx, by the way.

It seems those who shout the loudest get the most help. It's not fair, of course, but this is your kid and your family's future here. SN is not fair. Make a nuisance of yourself if you need to.

Chasing a dx is a personal thing. If you wait then have a time limit. Even if you are expecting ASD as adx it can still be a shock to get it.

Hang around here. Plenty of advice and experience to see.

Thanks again guys...

I went to see the HV - I took a printed list of bullet points "talents and abilities", "issues flagged by preschool" and "additional issues noted at home"

she says that SOME of the things on that list are just normal 3yr old behaviour, but that some of them are big signs, (I was kind of hoping she'd send me home with a "stop worrying you paranoid idiot" type comment) SO, she has booked him in for a formal development review (she says she'll look for the earliest slot available and check for cancellations etc so we can get that done before school starts again, so that they will be ready to contact the school for their input when Spetember comes around)

So, we'll just have to wait and see I guess.

Thanks!

the HV says that she will refer him to developmental peadiatrician after the review, if necessary.

Is it better not to wait for that and go direct through the GP?

Trust your instincts and go straight to the GP wether their wrong or right is neither here or there but waiting loses valuable time.

OK, thanks for that, I should ring the GP in the morning then.

Thing is, I feel horrible about it all. He's so bright, and, well I guess just becasue he's mine, I keep wondering whether we need to go through this? Could we not just manage.

It is only becasue I think about what school, and life would be like for him if the types of behaviours he has now, adn the types of things he struggles with now persist etc, that we are going through with this.

I know it sounds mean, but I just don't want my child to be "special needs" - Of course he's still the same child, exactly that I love to bits now, adn of course that won't change, but, I hope you can see what I mean?

Or, I think, it's not him that needs help, it's me, so that I can learn how to help him get the best out of the world etc.

Sorry, don't mind me, I am feeling kind of upset about it all today.

OK, that's really helpful, I felt like I was labelling him for life and maybe he wouldn't need or benefit from that.

Blimey, this is day one! I am prepared that it might all take a year or more to be resolved, I'll be insane by then I think!

DP also added a few MORE significant issues to my issues list, that I had forgotten. Also Ds amanged to display several while we were there, which was not ideal, but such is life!

Followed by an afternoon in which we went to a large shop, in which he decided that what he really NEEDED to do was make this REALLY loud, repetitive wierd noise (on later calmer questioning, it turns out it was "the noise an alien makes, I saw it on cbeebies") for the WHOLE time,(I could ask him to stop, I could bribe him to stop, bt only for a few seconds) added to spinning round and round. By the time we got to the checkout where he decided to hide under the belt and roll on the floor (personally I felt that this was fairly good, he was quiet and I could see him and he was not in anyone's way) I was really NOT in the mood for the older "gentleman" who helpfully pointed out that "parents today, just don't know how to use discipline"

usually, in ds defense, he does really well at the shops, but perhaps today was a really stressful day for him, maybe he could tell I was stressed or something.

Thank you again! I just realised, from your other thread that you are in Herts too, so it makes your advice extra useful!

Our dx only took 3 months from GP to multi team diagnosis so whilst preparing yourself for it being slow - also prepare for the fact that it might not be! In fact at our first speech therapy appointment we put her on the spot and she agreed ASD was most likely outcome and that was within 5 weeks of going to GP.

Good luck with it.

He sounds very bright and I am sure he will learn - but you might have to find a different way of teaching things other child absorb naturally.

Keep posting this board is a very friendly and safe place to be and we have all been on the same journey

OMG Agnes, well, we'll just have to see, then.

Justabout... ALL I know, right now, is that for sure ds is not like other kids his age. School suggested ASD of some kind, other adults who know him have only suggested tht he may be very gifted. For me, I'm just the unconfident parent in the middle, and with his dad definitely being on the spectrum, and the need for us to know how best to support his "otherness" - this was the way we chose to take FOR NOW. I don't kow what will happen, or how it will pan out, but I thnak everyone for all thoe advice and help, and friendliness, it really does help lots

3Trees, there are some similarities between your son and mine (4.5 now, diagnosed with autism when he was 3.5).

Have you done any research on Hyperlexia? It may help you reconcile your son's strengths and weaknesses with the possibility of ASD - I know it did mine. The original links I looked at no longer exist, but this may be of use.

www.eric.ed.gov/PDFS/ED460458.pdf