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 did not seek diagnosis for DS until he started school when it became imperative as he completely shut down. Until that point, and certainly at 3.8 I was very aware of his difficulties but worked hard to understand him and help him.

So I sit in both camps. yes I kept DS outside the sytem, though I probably was at least to a point in denial. However there came a point when I had to accept that he needed diagnosis to get the support he needed. This has helped enormously with school and statementing, etc, but there are a lot of professionals involved and report writing that seems to serve no purpose whatsoever. We seem to constantly be laying our family open to scrutiny, just to be told carry on what you are doing as you undertsand your DS's needs very well.

I think you have made a brave decision that is right for you and DS2 at this point. However there may be a point in the future that you do feel a diagnosis is appropriate, and is a true reflection of your DS's needs. You have to weigh up what is to be gained, against what can be an invasion on your lives.

At this point I do not regret diagnosis - it has opened many doors for us.

thanks widemouth. Did you/would you have used this board at that stage or is that something you wouldn't have felt ready for?

I was posting elsewhere on mumsnet, mainly in behaviour and development.

I was reading this board, but not posting. I wish I had posted, but wrongly i didn't feel 'qualified'. Actually it was this board that really helped me understand my DS, and finally pushed me to seek diagnosis when my understanding was not enough i.e. when he entered that big wide world of school .

'Or who complied with the NHS diagnostic process but feels their child has been misdiagnosed?'

Not quite misdiagnosed but in so many ways, my ds doesn't seem to quite 'fit' the ASD label (he has no routines, no rituals, doesn't notice/care about change, is affectionate, is adaptable, flexible and so on). So, although just about everything I read about autism doesn't apply to him, he had to be labelled with something because apart from his SLD, just what other label is available for a child who is totally non-verbal, doubly incontinent and can't be trusted!? We take the label because it opens doors, gives his teachers a handle on how to deal with him and so on, but it is his SLD which persuaded SS to provide respite care - my ds's SW told me that an autism label alone would not qualify us for any help

"Or who complied with the NHS diagnostic process but feels their child has been misdiagnosed?"
Yes and no - I don't really object to the dx, but I do object to using a dx to draw general, one-size-fits-all inferences about my DS that may be incorrect, and I do object to the idea that a dx means an 'expert' may know more about my child than I do.
The ASD label is giving me services, the relief of 'no more assessments for the time being, let's get on with it' and a reason why DS does not speak well (not that knowing the cause changes the therapy much, as you know). What the ASD dx is not doing, is adding much to my knowledge or understanding of, or giving me particular insights into, who my child is, at least not for the moment.
When I see articulated adults with ASD telling me about themselves, I can see it's part of their identity, but my DS cannot articulate who he is and how he feels yet (ever? again, fingers crossed), so I'd rather second-guess him on the basis of me being his mother, rather than on the basis of him having an official dx of ASD iyswim.
Not sure this is making much sense, but please don't be troubled about your decision: the argument from your DS1 is a very good one I think

as you know from previous threads I've ended up outside the system but more by the turn of events than any conscious desire. If I really wanted to I probably could push for another joint clinic ASD assessment - but since SALT and school don't have concerns other than DS's intonation I am not pushing for this at present. DS's glaring problem has always been language inc. receptive language rather than sensory or "conformity" issues.

in terms of your DS2 - he's getting great support from you/family and his nursery, and some support from NHS SALT - so at the moment you feel the diagnostic process isn't necessary, and why not make that decision? Bear in mind that health professionals often take the wait and see approach to ASD/language delay problems particularly at the initial concern stage - so why not turn it around so you wait and see?

Hi,
I'm a lurker on this board and have been ever since SALT assessed my DS at CDC and said he has "autistic traits". I haven't seen the report yet so I'm not sure what she spotted exactly- as soon as she mentioned autism I turned from someone who is normally quite composed to a gibbering wreck so I may have missed some of the things she said!
My DS is 4.2yrs and has in my opinion, expressive and receptive issues and that's all. Unfortunately we are in the system now and it's horrible. I hope I'm not offending anyone- this is the first time I've dared to pluck up the courage to post.
I have started the NAS Earlybird course, read so so much on autism, language delays/disorders and ASD,(mostly thanks to you all on MN!!)and I really can't see where he may be considered to be on the spectrum. We've only just started the process and he will be observed at home and at nursery and then we will have another meeting to discuss their findings.....can't wait!!
I believe some of his issues with language are based on his diet so we had him "Sunderlanded" and as a result removed gluten from his diet- this have been an enormous success- his language has improved SO much!!!He really is a different boy- but when I explained this to the paed I was given a look as if to say "yeah right"!!!
I think what I'm trying to say is that having seen how much his language has improved since changing his diet I would have never entered the system, but we're here now and I'm not certain what's going to happen really,

Thanks for reading, just wanted to share what's happening with my DS who as I've said does quite obviously have expressive/receptive issues but we're in the system and ASD has been mentioned..

Can I go back to lurking now??!!

Hi - I lurk on this board, in semi-denial! But today we got our home visit date for the community paed to visit our house...in THREE weeks..WHAH! That was a bit quick (best get hoovering now!) so I'm all nervous.

DD1 was prem and has done everything late. She's later than a late thing in late land. She's 2.5 and has just started to point I'd given up on that. HV and GP are perplexed as she has very mild ASD traits which she then seems to drop - pointing being the last big red flag. She's fun, affectionate, stubborn and bright but she learns big things like colours, shapes, the alphabet - yet can't make a simple sentence. She does repeat things and often not in context but occasionally she seems to say things that are correct.

I've got to the point where I need another perspective albeit a professional one because I see pre-school looming and if there is help needed - then I want it BUT (and it's a BIG but) I'm not comfy with being locked into a 'system' and having a 'label' stuck on her. I think I'll find that hard to handle and will try hard not to make a big issue out of it.

I wonder about the self fulfilling prophecy aspect of a diagnosis and if she's labelled, will we all treat her differently? I hope not. Like bellemaman we know there are expressive / receptive issues but there is the big ASD question dangling there too.

I'm back off to lurk as well

So pleased to meet you.

Thank you for all these insightful posts.

I knew I couldn't be alone. And I definitely think this forum is more fruitful than the "Einstein Syndrome" forum. In many ways it's the discussions with the mums of LFA kids and with Aspergers adults - and the things they have taught me - that have fuelled my doubts about our medical model.

sc13 - are you me???? You reflect my thoughts so exactly particularly when DS was younger and I felt that he was being squidged into a particular box for the sake of it. Actually it turns out he is very complex with lots of specific learning difficulties like auditory processing and visual processing as well as very very major dyspraxia. I think if he just had the ASD on its own he would be mild and able to cope with most stuff but with all the other things it compounds the anxiety, etc.

Ladies - I don't know whether I'd been posting on here when DS was 3 or 4. it was a horrible time. Diagnosis and all those reports are so intrusive and I just wanted to shut the door and just get on with things myself. Unfortunately the real world isn't like that. I think when they are still young their peers will still be doing some of the behaviours and the gap between our children and NT children is not as wide. It does get wider however as they grow - particularly on the social interaction side and it is then that you might need to start going down the reports route. I would say though getting it all done earlier is probablly better, if yuck, because then its done and you can just get on with stuff whereas if you put it off you know its going to have to be done at some point to get the help they need. Schools are very very stressy places for our children and primary schools demand a lot from a child and expect a huge degree of maturity and learning ability that our kid's find difficult to comply with.

Whatever you decide to do - good luck and best wishes. If it's any help - mine is 14 now and lovely.

Hello to all

I am going to start a separate post about this as I would really value advice and input from MN posters, but in a nutshell I am in the system - DS (5 in July, has been in reception since September 08) was diagnosed as ASD on Monday - but I don't feel the DX is accurate.

And I agree with other posters - I'm grateful for the help DS's school is suggesting, and which I do feel he would benefit from, but am uncomfortable with the proposed 'label' that seems to be necessary to get him this additional support.

I have spent the last four days trying to work out whether I am 'in denial' but I really don't think I am. He has never displayed any 'typical' ASD symptoms. He has met all developmental milestones, sleeps and eats well, potty trained easily, thrives on a reliable routine as all children do but is not particularly worried when things change. He is not ritualistic. He is very expressive and affectionate, and we have no issues with behaviour or empathy. His expressive language has always been very good and he interacts, I would say, as a neurotypical child does. He is shy and immature, and for example will take a while to 'warm up' at something like a childrens party, but generally joins in happily once 'warmed up'.

So at the moment it does seem to me as if we are being asked to accept an ASD diagnosis on the basis of him 'looking a bit lost' at school, struggling with the free-flow structure of reception class, having poor fine motor skills (which we do agree with, his cutting, writing and drawing skills are immature even for a child who's one of the youngest in the year) and not being particularly confident at making friends.

I am so relieved to see this thread, it really helps to see I'm not the only one! DS's school have explained that they really want to get him the additional OT and literacy help (mainly to do with the fine motor stuff) and that this is the best way to guarantee no school in the future can ever 'ignore' his needs. But still....I don't think he is autistic....and I just worry about him being stigmatised or stereotyped in future if he is not, in actual fact, autistic at all!

Amberflower...your ds sounds a lot like mine at that age. My boy wasn't dx'd untill a year ago (he is nearly 12 now).
I wish i had sought the dx earlier (simply because it took so long for me tbh...and also i wish he had had more help at a younger age)...but i get where you are coming from too.ds could pass for nt easily at school at 5 or 6. LOL... By 8 it was another matter. The other children were on a different planet to him by that age. Their social interactions suddenly became much more subtle and complicated....ds wasn't in the same league.

Very thought-provoking posts.

I am certainly content in my decision for now.

There are so many posts on this board saying "don't worry about the label". We don't talk much about why people do worry about the label.

I've typed and deleted so much more!

Manny- I think it's true that many of the children with so called severe ASD actually are very sociable. Certainly it seems to be the case in my research. Of course if you are non-verbal or have real problems with receptive and expressive language then you are going have problems with socialising.

Part of the problem is that assessments take place in clinical settings with strange therapists and in novel rooms. And so the idea that our children really can't do very and aren't interested in socialising continues (ds1 has great demand avoidance if he thinks he's being assessed).

I think for the severe end of the spectrum at least the problems are centred around sensory processing difficulties and executive dysfunctions which makes back and forth interaction impossible-however much the child might want it.

DS1 has become more rigid and less flexible as he's become older. I think that's in part because of increased awareness of the wold around him, therefore feeling more at sea and so having a greater need to control it.

I have read this thread with interest, because although my DS2 is currently going through the process of assessment for possible Aspergers, it was a difficult decision to make, and sometimes I regret having made the first step myself. His main problem is that he does not socialise at school and has terrible tantrums (away from school) if things are not done "just so". He plays very well with his older brother albeit on his terms but it worried me that he just didn't seem to want or be able to make other friends. The school's line has always been that "he is still very young, give it time etc" but now that he is in the system, they seem keen to get a diagnosis - I wonder if it is just so they can get extra help/funding? I sometimes wonder who the DX would actually benefit IYSWIM.

If I may pop in from a totally different angle, I think the people who do say 'don't worry about the label' are not usually people who are unworried about labels per se.

More often I think they are in a position where they see that for their child a label is inevitable, and that 'special needs' is on the whole a nicer label than some of the alternatives.

Or whose children are simply unhappy in the situation they are in.

But surely that doesn't mean that all children on the spectrum are going to be in the same position or that all their parents must act as if they were in that position.

basementbear we are currently asking ourselves exactly the same question. Honestly, I don't doubt that DS's school have his absolute best interests at heart and he can only benefit from early intervention and one-to-one support - what child wouldn't? But yes I think there is an element of 'once this label is confirmed then we will get the funding' about it.

troutpout I also read your post with great interest and obviously in my DS's case only time will tell...too early to tell at this stage.

To be fair, DS's school are incredibly pro-early intervention in the whole area of special needs (the head is passionate about it) which is fabulous, of course. And when I read posts on here from desperate mothers who are fighting, fighting, fighting for DX, recognition and support for their DCs it makes me realise just how lucky we are. I am, truly, grateful for the work DS's teachers are doing and the support they are offering.

My unease centres around two things. First of all, when I sat down with DS's teacher to have a brief chat about the outcome of the DX, one of the key things she said was that because the staff have always had this passionate interest in and support for special needs, they have frequently found it really heartbreaking in the past when children who have flourished with the additional support the infant school have provided then go on to middle school and receive no support whatsoever because that particular school is less interested/committed in special needs. With a recognised DX of autism at the top of his IEP, no school would ever be able to just 'do nothing' for DS. I hear what they are saying, I can see the logic, but still...

And secondly the verbal feedback from the paed didn't quite 'make sense' if you know what I mean. I have always understood autism to be a lifelong spectrum disorder - an autistic child becomes an autistic adult and how well they cope will depend on where they are on the spectrum. Yes? But she basically described DS as, outside of school, at what they call the 'engineers and mathematicians' end of the 'normal' social range because his home environment is a positive one and meets all his needs - i.e not the most sociable of characters, but perfectly neurotypical and will probably go on to be very high achieving. She then said that starting school appeared to have 'tipped DS across the line' onto the very mild end of the autistic spectrum, but that she feels he will learn how to respond and interact socially much more effectively with appropriate support and will then, most likely, 'cross back over the line' into the neurotypical engineers/mathematicians end of the social range as he gets older, with a possible brief return to the autistic sspectrum during the teenage years before ending up, as it were, as a neurotypical engineer/mathematician type. I can't quite work out how this is possible!

I am, as they say, a little dazed and confused....But we have a month to go before we get the written report, so I guess we have a while to marshall our thoughts into some kind of order!

Wow - interesting and insightful thread - well done for bringing it up Lingle! Now look what you've done....I'm posting again...I was only meant to lurk on SN

We are tentatively taking first steps to seeing if there is anything more amiss than a speech delay, but I'm worried about not being in control of a 'system' and that we'll get swept into it as a family and become somehow lost. I'm not sure I've put that properly, but I'm thinking forms, visits, acronyms, reports etc

I have an eleven month old who already speaks and points at everything! I think this just heightens DD1's delays.

Thing is I really don't have a gut-feeling! All I know is that everytime something worries me because all the other kids are doing it (waving, clapping, walking, words, pointing) she promptly goes and does it but around eight months later than her peers! Today she held another girl's hand - never done that before. She said her first sentence, in context (listen Mama, what's that....ah, it's an ice-cream van )and it was such a shock.

I think the trouble with a 'label' is that any personality traits may get overlooked and lumped into this thing called ASD. No child/adult is the same as another, but when there is a label it is assumed we now know what they're like and what to expect. Therefore we can find ourselves projecting our expectations onto them and not allowing the individual to come through. I'm sure many 'eccentric' people I went to school with in the 70s would now be labelled if they were in the education system. Maybe they would have have more help, a better time...or maybe not....it's impossible to know.

Gawd, that was long and doesn't make half as much sense as i wanted it too...(I'll get my coat)

DS1 was DX with ASD about 5 months ago and I am still torn as to whether it was the right thing to do or not. On one hand I've heard from the SEN department and he will be getting 1-1 support at preschool but OTOH there is no support available for what I see as the crux of his difficulties. So I am not sure if there is any point in it all.

Tclanger, the extent of my preoccupation with about DS2 is a luxury borne of having few other real problems frankly. Even my hairdresser flatly refuses to sympathise with other "problems" I come up with.... it wasn't always thus so I have a big worry-shaped hole in my brain! Also it's interesting....

Before DS2, it was the ice caps .

Troutpout, when your son "could pass" - did you still feel in your heart that he was wired a bit differently?