Is Anyone else staying "outside the system" for their "different" child at present?

[lingle]

Hi,

I spend hours every day thinking about and working on DS2 (3.8)'s needs and language issues. So I don't think anyone who "knows" me here would consider me to be "in denial" (ugly phrase).

But whilst "receptive language delay" is definitely "part of who he is", and I definitely feel he has "special needs" I just can't say that about ASD right now, and so I've declined to enter the diagnostic process. Which is quite a scary thing to do though the paed. and SALT were very understanding.

I know there must be thousands and thousands of parents who keep their "different" child "outside the system" including one close rl friend (who's a psychiatrist!). Most of them never see a paed. so they don't have to refuse the DX as I have. But so many of them seem to shy away from talking to other SN parents and probably would find it hard to post on this board. There are late-talker forums and I find them a bit over-determined to prove practically every child on them hasn't got autism. It's unrealistic.

Is there anyone I haven't "met" like me lurking on this board? Or who complied with the NHS diagnostic process but feels their child has been misdiagnosed?

I think everyone on this board feels like an outsider in one way or another - and this is my way of being one!

I have been on here many times folks but I name changed because more RL friends have been turning up on Mumsnet recently (and my old nickname was v. boring). Why do so many SALT's (excluding all the lovely ones who come on here) spend so much time telling children to sit nicely.

OK, I was liking the idea of a social skills class for DS in the future but you have put me right off
Telling the children to sit nicely? FFS They'll teach them how to curtsey next

I think a few stories about how friendship works plus supervised playing (where you hover nearby ready to intervene constructively if needed)plus family mealtimes where chat is attempted moving on to out of the home activities when your DC is a little more confident are just as good as social skills classes (ie, common sense). I used to think that professionals possesed arcane skills of which i had no knowledge, which could work wonders but most of the time they don't! they mostly play the wait and see game and unless they have DC's of their own with SN they are unlikely to know more stuff relevant to my DS than I do. Obviously this is not true for conditions that are less vague than "social and communication' disorder (most of the time anyway).

Wigglybeezer how old is your child and how long have you been declining diagnosis?

Ooh, what an apt thread for me. Lingle, you know me well, but for anyone else - I have ds1 (3.9 - same as Lingle's ds2) who has receptive and expressive language delay. I also have ds2 (21 months) who is chatting away and has more developed social and empathy skills than his older brother.

Whether it's due to a language delay/disorder or possible ASD, ds1's social interaction isn't great- he is affectionate and gentle but can take or leave people. His imaginative play tends to be learned rather than very spontaneous, although there is plenty of symbolic play. Basically there are enough very mild ASD traits that we've got him under observation, but not enough that anyone wants to diagnose.

This week I've been worrying myself sick about him starting reception in September. His social interaction is really immature, he can barely dress himself or put his own shoes on, he can read words and numbers but not always string together a coherent sentence. I could go on.

But - DH was like this and grew out of it. He is now a company director, and manages lots of people. I would struggle to find many ASD traits if I looked really hard.

It is a very difficult decision. I am starting to wonder if I've made the right choice in keeping him undxed and choosing a small school for him. Maybe a larger one with a possible statement for him would be better in the long run.

Mumslife, I think you misunderstood me a little, I do not think that my child will change from having Asperger's to not having Asperger's but that he could change enough to cross the line from ticking just enough boxes for a diagnosis to not quite ticking enough boxes to get a diagnosis.
I was talking about this to DH recently as we both did the AQ test that was published in Wired magazine and DH said when he was younger he would have scored a lot higher (he was an odd child in many ways) but that he had learned a lot (DH runs his own company too) from working and being out in the world and having major life experiences.
A lot of DS2's issues seem to be sensory and they can make him seem odd, for instance he likes to have his head covered so usually keeps his hood up come rain or shine, but he is 8 now and seems to have growing self awareness, the other day he saw himself (with hood up) in the rear view mirror of the car and declared "I do look a bit weird with my hood up don't I", he has decided to wear a baseball cap instead. To my knowledge he had not been teased about the hood thing(I have spies in his class!).
His most prominent AS features are some stimming(not at school) some gross motor issues, variable eye contact and a preference for spending lunch hour walking up and down by himself thinking up stories rather than playing but he does have a (small) social life and talks to kids in class and swimming club etc. His language is mildly poncetastic sometimes (and he sounds posh!). He is good at maths but struggles with reading and writing. He was a dead easy baby, is pretty flexible, eats and sleeps well, does not have any weird obbsessions, and very rarely has minor meltdowns (hides under duvet). He is happy and kind and engaging with the world more as he gets older. I find it very hard to think of him as a problem child as he is generally easier than my other two boys.
He is eight BTW, he has a DX of social and communication DXed from observations, tests, and a questionaire filled in by me (which i found very difficult as so many of the answers could have gone either way).

I'm becoming concerned that my SALT and paed's fixation on ASD could result in them not providing the most appropriate help this next year which is DS2's final nursery year.

The SALT is focussing on visuals which is good and so I want to keep her relationship with the school if for no other reason (she understands that she has to keep nagging the staff to "stay visual" because as non-visual females they will tend to switch back to expansive explanations). But she is also obsessed with seeing what I understand to be "pragmatics" problems that DS2 simply doesn't show at home. Problems with "pragmatics" are apparently problems with things like turn taking, topic maintenance and understanding what information the listener needs or does not need. These are simply not DS2's problem areas.

Ugh, have just been saying to DH that we are going to have to stay engaged and learn enough to stay in control.

Or of course I could be completely wrong!

Anyway, have just bought a book called "receptive language difficulties" for under a tenner on Amazon aimed at teachers and it is telling me lots and lots.....

I think this may be where I fit in with ds1. He does have a diagnosis of Senosry Processing Disorder and I am constantly going back and forth as to whether I should push for more evaluation. He's doing so well atm though I think we are just going to continue with what we are doing. I have always suspected Asperger's but not sure I want to know at this point.

Just ordered that book lingle, let's compare ideas once I've had chance to read mine..

To look at it from a different angle I wanted the dx for my dd but her school said not to as it would jeopardise her place at the local secondary school language unit. I have seen enough teenagers who get a later dx 12/13 where things have just got so bad that I am really that I got my dd's dx and the help that goes along with it.

Lingle sorry I don't get what you mean by the paed and SALT's fixation on asd? Surely it would mean the opposite and your ds would get exactly the help he needs rather than hinder it??

*I am really happy

mumslife your DS sounds the exact opposite of mine, admittedly he is not yet 5 but it is the school who are flagging up concerns and according to the OT who assessed him in the classroom for an hour or two he is showing autistic behaviours there, i.e. not really socialising and seeming a bit lost in the classroom setting.

At home it is the polar opposite, I have literally never witnessed any kind of autistic behaviour either at home or when out and about as a family (we can take him anywhere and he copes fine - chatty, happy, observant, interested in everything), unless you count the fact that at times he might 'tune out' and not immediately respond to what someone is saying to him. He will then usually respond once prompted.

But 'ignoring' adults from time to time when they don't feel like responding is hardly a specifically autistic trait - most neurotypical children can employ this tactic on a fairly regular basis from what I've observed with other children!

The only way I can describe it is to say that DS must behave in a 'selectively' autistic way at school - and I didn't actually think such a thing was possible! It seems a bizarre situation that we are in, I don't want to reject the help the school are offering DS in terms of additional OT and fine motor skills one-to-one support because I do agree he needs this - I just don't think, and never have thought, that he is on the autistic spectrum.

amberflower, do you think he just may be highly sensitive in a sensory sort of way and just kind of "shut down" when he has too much sensory input, such as in the classroom? I think children like this are easily misunderstood and run the risk of being mislabeled/misdiagnosed.

jabberwocky that's certainly a possibility. He definitely seems to find the classroom rather confusing and overwhelming, although is very happy in smaller groups or one-to-one.

However, I can't say he has sensory issues as such, or that he finds large groups of children overwhelming. He does find sudden loud noises quite scary but no issues with background noise, or indeed loud noises he is expecting. He also has no problems at a busy, noisy swimming pool, at softplay, the park or busy public places - for example we went to an aquarium today, full of kids, adults, unfamiliar sights, sounds and bustle, and he loved it. He just seems to 'opt out' somehow in a more formal setting (classroom or very 'structured' kids party) when an adult is explaining rules to or teaching a large group of children. Maybe that does put him on the autistic spectrum, but it just doesn't fit with the rest of him if that makes sense.

Hi

I think what you have to remember is that the autistic spectrum is extremely vast and I think even within the mild/moderate/severe there are still levels. I think my dd has Aspergers quite severe but know other children who are affected far more mildly than dd. I know at least 25 children with asd and could honestly say that not any of them present in the same way. Like everyone they are individuals.

As a parent it's your choice if a. you get a dx and if you do then b. you can remove if it is of no use. I wouldn't worry about misdiagnosing this very very rarely happens in fact it's the other way round lots of children are not getting diagnosed/slipping through the net.

Here's another thought: Could he be simply bored in the classroom? Do you think he is capable of working at a much higher level? We have had to really work with ds1's school to ensure that he doesn't fall into that situation.

Hi lingle. I dont think we have met before so 'hello'

My ds is 7 with a dx of aspergers - I am 100% glad about the dx because I know it is appropriate for him. He likes knowing there is an explanation for why and how he experiences life the way he does - obviously this understanding will develop as he gets older

I always fail to understand why people hesitate about a dx - it has helped our family enormously

With regards to the system........

DS is very unhappy at school and is convinced that no LSA etc type help would make him happier, he comments on how awful school is every day.......

His school seem to ignore his additional needs

Therefore we are going to experiment with life outside the system by Home Educating him - a decision he is very happy about

I think he is probably overwhelmed rather than bored. He's one of the youngest in the class, an only child and has poor fine motor skills, so his work seems very poor compared to all the others. He is bright, but not at the mega-high-flying end, I don't think. However, he's very aware that he is not 'as good' at things as the other children.

Blossomhill I agree - I am aware the spectrum is hugely vast and it is possible that on some very very mild level he is on that spectrum. My concern is that, given that he only presents with the 'symptoms' at school (see my previous posts on this thread re his teachers comments etc) this is a huge label to pin on a child to enable the school to get school action plus funding for the additional support they believe he needs for year 1.

We need to wait and see what the report says, but I think what we will end up doing is accepting the DX to ensure he gets the additional support, but put a note in the parental comments section of the IEP stating that we agree completely that he needs and will benefit from the additional one-to-one support the school are proposing, we do not necessarily believe he is autistic.

We are also planning to ask the school for absolute confidentiality as, barring a couple of friends we have confided in for our own emotional support, we will not be making any element of the DX public to family or friends. For the moment it is purely an issue at school and we therefore see no benefit in telling anyone else about it. Mainly because we don't want people making assumptions, jumping to conclusions about him and treating him differently because of their own 'view' of autism and what it is.