Still reeling from being called into school last week - possible ASD in 5yo

[YankNCock]

I don't even know where to start and I'm really tired of bursting into tears.

DH is out at a birthday party with DS1 and has just texted that DS1 (5y6m) has abandoned the party tea in favour of running around, won't participate in any games and refused to even come near to sing happy birthday. And this is his 'best friend' who he's known practically since birth. I'd just chalk this up to 'oh he's never been much for joining in', except that on Thursday I got called into school.

Bit of background, DS1's childminder (also my neighbour and friend) told me just before he was 3 that she was concerned about his understanding and comprehension. He didn't seem to understand when people talked to him or asked questions, and would just refuse to answer. I called Health Visitor, asked DS's key worker at preschool to write about what she was seeing. HV put it down to 'too much television' and said that she was surprised the preschool had written something 'so negative' about him. So we had a telly ban for a month and have rationed ever since. It seemed to improve things, DS starting talking more, initiating conversations, so I left it.

Reception year was ok, though I did feel like he was a bit behind, but I put it down to him being the youngest in the year (late August birthday, started Reception just over a week after turning 4).

This year, in Year 1, the differences between him and the others are becoming harder to ignore, though I must admit I didn't really consider ASD a possibility until just a few days ago. And now looking back I can't believe I didn't put it together myself! Last month his teacher spoke to me because DS had bitten another child on the finger - and it wasn't the biting that concerned her so much as his reaction. He went completely blank and shut down, wouldn't speak or answer any questions.

Then on Thursday another teacher who works with him in phonics called me in to say she didn't think he was going to be able to pass the phonics test at the end of the year. She brought up that he doesn't seem to be listening a lot of time, and she'd had to take him to the deputy head for a telling off that day as he was disrupting the class by making silly noises in another child's face when they were all supposed to be paying attention to something. She said he looks 'glazed over' a lot of the time, but she is surprised at how well he can spell considering he really appears not to be taking anything in. She also mentioned that he doesn't really play with the other children, but is mostly running around outside the little groups that form, doing his own thing.

I spoke to my friend (DS's former childminder) who asked if I'd ever noticed that he had some ASD traits. She mentioned the hypersensitivity to hand dryers (and other loud noises at times, but particularly hand dryers) and the constant nail biting. I started reading up more and I'm now convinced he has a mild ASD and I can't believe I didn't realise it sooner. My friend says she didn't want to keep banging on about it, but she was very surprised that the HV dismissed the concerns when he was 3 and that preschool and Reception didn't pick it up after that (until now). I went back to the teacher on Friday morning and mentioned what my friend had said about ASD, and I could tell by her face that I'd hit the nail on the head. Of course she said 'I'm qualified to diagnose this' and I said 'but I can say it if I think there's a possibility, right?' and she seemed glad I'd come up with it on my own rather than having to be told.

So that's it really, thanks if you got through it. School says they will get an observational assessment done, but not for a few months as he's not the top priority. I've written to the GP to ask for a referral to the community paediatric clinic that apparently deals with making diagnoses. I've also made an enquiry about a private assessment and diagnosis, but just the initial consultation is £300 and we're skint.

Should I be doing anything else? If he does have an autism spectrum condition, I just want to have it solidly confirmed and then figure out what the hell I do next. I watched my parents go through this sort of thing with my brother with his ADD, and my mom told me that now she suspects he actually has Asperger's Syndrome. I just remember things being so difficult for him, and I'm scared it will be the same for DS now.

ack that should read 'I'm not qualified to diagnose this' in the 3rd para from the bottom!

I would ask the GP to refer your child to a developmental paediatrician rather than a community based one.

Has the SENCO at his school been at all involved to date?. You need a meeting with the SENCO now. I think it is wrong of them to say actually that they will get an observational assessment done but not yet as he is not top priority; they are fobbing you off here. That may not happen till September at the earliest. I would say (and I will stand corrected) that a person like an Ed Pysch cannot diagnosed ASD as they are not qualified to do so.

I would also suggest you look at IPSEA's website www.ipsea.org.uk as this could prove very useful to you both now and in future. Keep posting here as well; this could also become an invaluable resource to you. Knowledge is power!!.

(Have seen you around other parts of the board and your posts to me are always worth a read).

Yank while you are at the GP you could ask for a Speech and Language Therapist referral. SALTs eg set up social communication groups so that dc can learn eg some social communication rules through the conscious channel.
And also ask for a referral to a sensory OT. These Occupational Therapists can recommend techniques for helping reduce over-sensitivity eg to the sound or feel (whichever it is) to the dryer, and maybe get some techniques going for reducing the distraction caused by other sensory issues. Some sense can be triggered much more easily than the majority of the class, some need more input to get the same reaction as the majority.

Polter has a sensory thread running on these boards, but the GP ought to be able to refer you as well.

As it happens, the law says that your child's SEN must be met, and a child who has a social communication issue that means that he cannot join in play in the play ground, ought to be triggering the school into action and getting something going as well.

Keeping the school as your friend will help to get what dc needs, so I agree, get a meeting going with SENCO and CT plus TA and get yourselves a list of all the concerns that they have and you have, and an action list with who is doing what.

Do not blame yourself for not spotting this sooner. None of us see our kids in the context of their peers very often, so your dc's best friend's party has been a revalation, and you are acting on it with impressive speed.

Keep up the good work, and come back to the boards when you need anything from a metaphorical shoulder to cry on or ideas for interventions, or any advice.

Good Luck

Oh and if you are in Kent/Sussex you can get help with the cost of educational report from the Bedgebury Foundation, so for private SEN reports like Educational Psychologist, Occupational Therapist or SALT they could help with the cost.

Maybe keep that in mind for a bit later

Thanks for the replies.

The SENCO part is a bit interesting. The teacher who was the SENCO up until about 3 weeks ago suddenly left the school for 'personal reasons', and by all accounts she was absolutely crap at being a SENCO so it's no big loss. Now one of the Reception teachers and another teacher (forgotten who, looking for newsletter) are jointly taking over the role until the end of the year. I don't really know how it works in the school, but it does make me wonder if this hasn't been flagged up because of the previous SENCO? Guess it doesn't really matter.

The teacher I spoke to on Thursday is not his class teacher at the moment (but probably will be next year), though she does phonics with him. The Reception teacher who is now joint SENCO wasn't his main class teacher either last year, but she also worked with DS quite a bit last year so maybe it's worth approaching her for a chat.

I've had an email back from the private assessment and diagnosis place and they've said the £300 consultation is for when the parents aren't sure if there's enough evidence of autism to go ahead with a full assessment. She said in DS's case, from what I've described already, she doesn't think this consultation would be useful (i.e. the evidence is clearly there). So the next stage would be to decide what type of assessment, and the cheapest one is over £1,000! It's just not possible, we will have to wait for the NHS.

Attila, as far as I can tell, it's the community paediatricians that deal with all the diagnosis in our area. The teacher said this person who does the observational assessments only comes once a fortnight and there were a few on the list ahead of DS so it would be May or June before his turn came.

thanks senvet, I'm up in Warrington North Cheshire though. It wasn't just today's party, he's done stuff like this at parties or group activities for ages, at least since he was 3, maybe before. We just put it down to 'he's not one for joining in'. He was sitting in a corner for most of his own birthday party last year :-( It's like a veil has been lifted and I'm now seeing all these little 'quirks' in a completely new light.

There you are, getting it all sorted already.

You are doing brilliantly, and things will get better.

If it helps, at the start assessments, reports, interventions seemed to be on us 24/7. After a bit, I could set aside times when all the admin etc would be put away so we could just enjoy family life.

Just an idea in case it helps at some point

Yes, save your money, stick with the GP referral route but be prepared for a wait.
Hopefully the school will start to put some support in place in the meantime, the new SENCOs should be able to suggest what, or get advice from an autism outreach team.

I just remember things being so difficult for him, and I'm scared it will be the same for DS now.

Things have moved on a long way. Not far enough, for sure, but definite progress.

People who do things differently form the majority, mainstream, bog-standard folk do have to deal with the ignorance of the majority, but awareness is improving little by little.

I have 3 grown up relatives with ASD/C and all are living happy lives. I am richer for knowing them, and for seeing things from their point of view.

[hug] don't lme yourself. Do drop in on the Goose and Carrot threads, and ask for advice, support.

My DD wasn't diagnosed until 9, and I know plenty not diagnosed until secondary.

Def don't beat yourself up at all.

I'm not in your area, but my experience of community paediatricans is quite frankly appalling! We had several supposed assessments, and just got fobbed off by a silly cow, who thankfully is no longer working in the service!

I ended up complaining because I knew, as a mother, that something wasn't right (whether ASD or not). 15 months after making my complaint, and 6 months after seeing an amazing consultant clinical psychologist who works with children, we finally have our diagnosis! We've been in the system for 5+ years and only just got sorted, but that's because we didn't see the right person. We are now only at the beginning of the correct journey, but I can't thank the pyschologist enough!

What I am trying to say, in a roundabout way(!) is to trust your instincts. You know him best, even with the amount of time spent at school with teachers etc. and yes you might have to fight, but it will be worth it, to get him and you all the support you need.

Def try and speak to the SENCO, especially if she knows him from school.

Private is really expensive and not always excepted by school or nhs.

I think it's only of real us for people like me who are fighting for statements or in the nhs system but unsure we have the correct diagnosis

I spent far too long after the lightbulb moment and knowing something wasn't right, not persuing it earlier etc. But that doesn't help.

I agree right now it's best to read up on as much as you can, decide what you want to work on and how you want to work on it.

Wait for the observation and take it from there.

What I found useful was to keep notes of what DS does that concerns me. That was what Camhs read - and based thei referral for asd on before they even met ds!

I would make an appointment to see your GP without DS. If you can take a letter from school stating their concerns ot would be helpful. My GP was reluctant to refer DS to the community Paeds, it took two visits and a lot of tears but he eventually did.

I did take DS for a private assesment. The waiting time in my area for an appointment at the child development clinic is 14 months. It took nearly a year from first seeing the GP to even get on the waiting list. I felt like I was stuck in limbo not knowing whether he had ASD or not.

We are in a similar position with DS who is in reception, just at the start of getting a diagnosis. His school are great and have put in place support and interventions for him already while we are waiting for the formal observations and stuff to take place.

They are doing daily work with him on his social skills, have arranged a SALT to come into school weekly to work with him. I am very thankful that the school is being so proactive.

While you are waiting for the assessments can you meet with his teacher and the SENCO to discuss what they are doing to help him now? They should be able to put at least basic support in place even without a formal diagnosis.