Advice please, wise mumsnetters (long & a little bit ranty, but please help)

[onefootinfrontoftheother]

Those of you who have been here before, please give the benefit of your hard-earned wisdom.

I am pretty sure my DS, 4, has AS (huge meltdowns, rigid need for certain routines, obsessive interests, amazing vocabulary, but very literal understanding, over & under sensitive to sensory experiences, etc, etc). He is the middle child of 3 - older DD and younger DS, who are both vey happy, confident NT children.

I have known that he is 'different' since he was about 2wks old, but only really suspected AS since he was about 2 yrs old. I am an experienced primary school teacher (and a few years ago was senco) who has worked with a a number of children at various points on the autistic spectrum, and since suspecting AS have read up (Tony Attwood, etc) on how best to support him, and put all my energy into developing effective strategies to enable him to cope.

DS had support from a portage worker, who stuck her neck out by suggesting that she too was fairly certain he has AS, but because he is so intelligent in many areas and has such good vocabulary, he will be 'difficult to get to the bottom of'. At the beginning of last year, he was seen by the local paed, who suggested that he doesn't have any form of ASD, but instead suffers from my weak parenting, in particular, the fact that I let him 'work to his own agenda' too much (how much easier my life would be if I did!!!). She advised me to attend a parenting course and would see him again in 6 months.

Since then, I removed him from his preschool (getting him there was unbearable and we had persisted for over a year with no improvement) and spent 4 months doing lovely activities with him at home which showed me his true, relaxed potential, as well as attending local children's groups to ensure he still spent time with his peers (riot gear used regularly!). I attended the triple p sen parenting course (the course leaders wondered why I was expected to attend, said they had got some good ideas from me, and crucially added, that from what I had told them, DS does seem to be very AS-like, but as he is so well supported is unlikely to get anywhere with the assessment process). DS has started nursery at a fantastic school (unhelpfully, this is in a different local authority to his local paed), where they have recognised his difficulties, and amongst other things are working with him to get him to interact with his peers, have referred him to OT with regards his sensory issues, and to the local nursery sen service. They are working towards building a bank of evidence so he doesn't get fobbed off agin by the paed. They have also told me that they have noted in meetings that I deal with him very well, and without the support he receives at home, his difficulties would be much more obvious.

On Christmas Eve, I got a phone call from the paed's office offering a (cancelled) follow up appointment with the paed. I jumped at the chance, as it has been over 9 months since the original appointment, and I feel these have been 9 wasted months where he could have had some proper support, but I won't be able to speak to his teacher or the SENCO for advice beforehand as it is before the start of term.

So my question is, how do I play the appointment, with the aim of getting the paed to take him seriously this time?

What I would like to do is:
-rant about how useless she is and how she failed to meet my DS's needs,
-tell her I want nothing more to do with her as she is so inadequate,
-demand that DS is seen by the local paed of the authority where he attends nursery, as she has an excellent reputation for taking the 'less obvious' children seriously
-tell her that if DS does not have AS, then he certainly has some sort of issue, and as a health professional it is her job to begin the process of identifying it and enabling me to support him.
(Please note, I am usually very averse to conflict of any sort and normally would just nod politely and smile, but, grrr, how dare she tell me my parenting is to blame, when I stand my ground during the most explosive of situations and work so bloody hard to give him what he needs, even when this is contradictory to what he wants!)

I really want to make progress for him. He is just about coping at the moment, thanks to his amazing teachers, but I worry that as he grows, and school changes to have different expectations of him, he will start to lose the success he is currently experiencing and I will not have the ability to support him as well as I do now (he will also obviously get bigger and stronger - at the moment, he inflicts relatively insignificant damage to others and his surroundings, although my arms still bear the bite marks from getting him to nursery last week, but how do I stop him from causing real injury/damage as he gets stronger?)

From the perspective of an onlooker, I am coping ok, but there are many days when I just don't know what to try next, and I often feel truly on the edge of sanity. If I don't fight for him to be understood, then I have bleak hope for his future; if he does get support, then he has the potential to be content and satisfied. I understand that relative to what many of you experience, my situation is 'peanuts' but I know DS's life could be so improved with the right support.

WWYD?

I have been there its horrible, especially as a professional yourself.
I would go in there with every report you have, with a list of difficulties he has, with a list of yours and school concerns and be polite but firm.
Tell her what you want, be as clear as you can. If you want a referal to another pead, take that name with you, if you want an ados test tell her. I was too soft the first time round, now I don't mess about and I also don't move until I get what I want.

I still remember when it was suggested I attend a certain parenting course, when I said i couldn't she asked why. I had to explain I was running it!

Do ring the nursery as many staff are back before the kids and so may be able to send short report too.

oh dear. they hurt don't they?

you need to collect evidence. lots of evidence.

this is what triggered, this is my response this is his response.
I found that using information on the internet helped when filling in the cars forms. some things that he did were so normal to me that I did not realise that they were significant.

I think I was lucky in that I did not have to do the parenting course, though have done it anyway incase he does not get diagnosed as this eliminates another step. my most valuable bit of paper is the bit where the dr writes I do not need to do the parenting course and that I am doing everything right... many sympathies for you being disbelieved.. it rankles...

I think it is difficult. there is no display on his forehead stating how well he is behaving for the triggers and how well you are parenting him. how much worse it would be if you were not experienced and had not worked out all your strategies. it is a bit of a no win situation. you know getting bitten is not peanuts it is diifficult. getting bitten is not normal...

Keep a diary. Detail everything that differs from the "norm". Photocopy it and take it along to the appointment. Take a letter from the school that confirms your concerns.

At this stage you want a referral to a multi-displinary team capable of performing the ADOS assessment. Put this request in writing as a formal request and hand it over to the pead at the appointment (evidence trail).

See if at this next appointment the diary, school letter etc help & try and suss the peads knowledge of ASD by asking some pertinent questions. Often docs seem to take the attitude of waiting to see if abnormal behavior is just a phase or if it is sustained before acting upon it. You'll be able to suss out the pead's attitude at this next appointment & hopefully the diary will swing it so that you get the referral you need (could be another 18 months till your child is actually assessed though even if you get a green light!).

Do bear in mind that if your child appears to have a normal IQ, and reasonable expressive language skills then the NHS & education authorities will adopt a wait and see appoach and blame your parenting as that is the cheapest option. If I knew when my own son was 4 what I know now, I'd have skipped years of being fobbed off (and 3 failed school placements along the way) and gone private before things deteriorated so much I was unable to work and therefore fund a private assessment.

If you can afford it go private & get a diagnosis, use this to apply for a statement and DLA. Then let this pead play catch up with you, rather than enduring years of being patronised while your child suffers. Many of the good neurodisabilty centres take private patients e.g GOSH, Liverpool. A diagnosis obtained privately from a centre of excellence will be accepted by the local NHS.

Your being an ex-senco makes no difference on this side of the fence, a badland where "everyone" knows that all Mums push out their brains, expertise & knowledge with the placenta. (rolls eyes and asks forgiveness for her bitter snarkiness).

If it helps the very parenting techniques I was criticised for using when DS was younger subsequently turned out to have been the right ones all along. He isn't NT! We have to work 5 times harder to see 1/10th of the reward of NT parents sometimes - so this kind of patronising airy assumptive criticism can really hurt. You are learning the hard way that if you don't fight for your child's support noone else will.

Evidence and another paed may be the key.

My son was seen at aged 2 - told nothing wrong with him. Se blew bibles, he looked at the bubbles so clearly not autistic. Was a surreal appointment with her going on and on about a headache. We moved a few weeks later.

He started pre school. More issues and he got a place at a sen nursery. Staff there said again he wasn't , he lost his place and as the nursery well known I our area I was seen as a crazy mum and battled on to try and get him dx to no avail. We moved agin -dh in the Armed forces - DS now aged 7. Decided to say nothing to new school. On the first day called in and they said he is clearly autistic , please take him to your GP. I got a military officer doctor as my GP - she was blinking amazing and the school put everything in writing. The professional again started from the point I was some crazy mum because they of course had access to the previous crap reports. This time though I had the school who also called in autism outreach who said he was clearly autistic. He was then finally dx. We then moved again but this time back to the crap area (why o why I did this I don't know!) this time we had the dx and we got him state enter - he's now at 32.5 hours and is failing in mainstream and we are now fighting for special school. He was dx from SALT aged 5, we've just had a private report done - expressive language at less than 1% and all the other detailed reports make heartbreaking reading but yet a few years ago he was apparently 'fone'

It has been a long battle but was worth it. It's just pot luck sometimes on the professionals you get. Your battle now is trying to convince the first dr that they are wrong and that is hard to do cos of course they feel they are right. Get as much evidence in writing as you can and be firm and polite. If she is unwilling to help then insist on a referral to someone else. The professionals can be wrong - I wasted 6 years and they were the most valuable years.

Definitely a diary as others have said but also get specific evidence of things like repetetive behaviour, ridgitiy, lack of imaginitive play, social difficulties.

I went through my Tony Attwood book with a pack of post it notes and jotted examples of Dd3's behaviours that matched statements in the book.

When I went into the room at CAHMS with it in my hand there was a definite feeling of being taken seriously.

You are probably going to have to fight to get your Ds diagnosed but you have to keep going because his next school or even teacher may not be as good.

Try to get a SALT referral as he may have chunks of language that he doesnt understand and you can begin to work with him on that.

The best advice I wss given was from a MH nurse at cahms who told me to treat Dd3 as if she did have asd because we couldnt do her any harm by using the strategies, from that moment and after coming on here our lives changed and she became much less stressed and therefore more manageable.

Good luck

Tons of good advice here. The diary/list is critical. I think if at all possible you should take someone else with you too - two people are less easy to fob off. One thing that may be helpful is to understand exactly what the dx path is in your area - every area is slightly different (and I'm in Scotland which is completely different again!) so you can be sure you're asking for something that would be usual for them to give, if that makes sense.

Good luck!

Would someone from the school go with you to back you up?

As the others have said take as much evidence as you can muster and preferably not just from you. IME it doesn't matter how much you say as a parent, they are often only willing to listen to other people (teachers etc).

But also don't count on the diagnosis as the key to accessing resources. My two HF ASD DC were discharged from CAMHS and pead on the same day (they only support ASD DC with co-morbid issues eg LD, AHDH).

They only support they get is through education (and neither have a statement as we lost that battle as well). Work with the SENCO now, and don't wait for diagnosis.

This woman will probably barely remember you and ds from last time. while this us normally a bad thing, you can turn it to your advantage. Smile through gritted teeth, and thank them for the parenting course referral. "Like you, I worried at times that maybe my techniques were to blame, such a relief to have that disproved". Sing the praises of the nursery "He's come on so much, I knew some stuff as an ex SENCO, but obviously early years is different and their expertise with ds is amazing".

Ask if she'd like a copy of the OT report when it comes, and ask that, when the time comes, whether she would prefer ds to see SLT locally or via nursery. Then say with ds being so verbal and bright would she recommend the ADOS now, or wait till he's old enough for the next module (just my opinion but from my dc, module 3 is better at picking up the less obvious dc)

You know the drill, you've got an asd dc. Use the skills on the professionals! Smile, stay calm, don't get into side-arguments, don't back down and give a nicely presented choice of two options only

Thank you so much, all of you.

I certainly feel a little better armed with your advice.

I think last time I, naively I know, expected some sort of acknowledgement that DS is really struggling and advice for a way forward, not to come up against a complete (& thoroughly insulting) dead-end. Now I feel a little wiser and battle ready, but don't want to waste any opportunity to get the ball rolling. So with your ideas in mind, I will go in with a different outlook & expectations.

I love your thoughts:
-not leaving til I have an acceptable answer;
-using my ever-developing skills to my advantage with the professionals (one to keep up our sleeves in any difficult situation, I think!);
-bearing in mind that actually, very few people are going to want to spend their precious budget on supporting DS, so anything is better than nothing...though I will still fight to get the best I can for him;
-I have ordered a paper copy of Tony Attwood today (mine is on my kindle) and a bumper pack of post its

I do have one question regarding the diary though. I have been keeping a list of things/strategies we use to support him, and noting major meltdowns with the trigger, our response and his response and any anecdotes that signal something, but I'm unsure of how to record the little day-to-day things. If I were to record all the behaviours that signal AS to me, I would be forever writing. And that's just the stuff that stands out; I'm sure we are so used to some of his very odd quirks that we now think of them as usual! How do you decide what to include and how do you make recording it manageable?

Again, thank you for your help - I knew I could really on the fabulous support from mumsnetters!

Rely, not really.

I would include anything that strikes you as outside of "normal". I had a diary on my computer, I used to make notes during the day and type them up at night.

It is hard and you do have to be tough on yourself but honestly it is worth it and remember you know your child better than anyone.

Good luck