CAHMS Accepting DS case...why am I sad ?

[Babieseverywhere]

Short History

1. Our 6.5 yo DS has struggled with social interactions especially with his peers, obsessional hobbies and is a very impulsive and anxious child.

1. Last two years of assessments via Comm Paed resulted in no dx (not on ASD spectrum). DS's issues are resulting from my poor parenting. Me to REPEAT parenting course already done before.

1. Referral to CAHMS for anxiety issues but told we would probably not be seen.

1. DS is highly anxious about attending school but masks behaviour whilst there. Teacher report he is a normal well behaved child but he gets loads of negative behaviour points and bump notices.

1. School say he has many friends. I see no evidence of this.

______ CAHMS meeting earlier in the week with DS and me.

Started with old myths....well he has good eye contact and is affectionate so no asd. I corrected him....no asd as he passed his ados but eye contact and affection are not part of the asd criteria.

I explained I just wanted help reducing DS anxiety, improve his social skills and reduce his obsessional behaviour.

I was told I was being very reasonable in my attitude and goals

But he wanted to look at the ASD pathway (again)....Guess DS crawling on the floor and trying to crawl into his lap might have changed his initial opinion.

Or maybe the fact that I recently found out that my brother has been dx with ADHD and HFA (aka Aspergers) and is close in behaviour to DS. Something the last doctor didn't know.

I just feeling very mixed about this further assessment with CAHMS, whilst I am still trying to accept DS is NT and how to address my parenting like the last doctor said to do.

I am worried CAHMS will just lead me around on a pointless circle.

I just want to be able to help DS, not repeat the last two years of not being believed to get to the same result.....Sigh

If he gets on with his person at CAHMS that is a good thing. The Psychologist I saw there said they were more used to dealing with "complex presentations" (code for ASD girls and late diagnosis, I think). Even if he doesn't reach the threshold for diagnosis he could show "traits" and I think ASD ways of coping are often useful for traits and do no harm to anyone who is NT.

My DD would have been highly unlikely to have been diagnosed at 5, but was at 9.

Thanks mummytime

polter I know I would be welcomed at the pub (lovely posters) but for the same reason I don't go to the local asd support group anymore. ..I am a poor parent to naughty child, we don't belong there any more

Different professionals can take very different views on this. The clinical psychologist who diagnosed my DS said cheerily “well he might not quite tick all the boxes but let’s call it Asperger’s. I like to be creative in my diagnoses”. And that works fine for my DS – brought him the right support and understanding for his issues, and the right support for me as a parent too. But I have heard of other parents who had a much slower diagnostic process because their paediatritian insisted on all the boxes being ticked before they’d say it was an ASC. They got there in the end though.

There is no truly “objective” measure for whether someone has an ASC or not. Even ADOS is observation and interpretation and you might get different results from different people or at different times. It’s all a judgment call. And especially in atypical cases there is a lot of variation in whether you’d get a diagnosis from different professionals.

You don’t have to avoid the local asd support group. Take whatever support feels right to you. I’m sure some of them will also have had the experience of being knocked back by professionals. It’s not your fault that some of the professionals don’t see what you’ve seen, and you did have that speech therapist who saw the ASC qualities in your DS, didn’t you? So it’s not just you. Have faith in your own judgment

But I was wrong the ADOS showed my previously held opinion that it was adhd or Aspergers (or both)

Two SALT's an audiologist and first report from OT all saw ASD social communication difficulties and other ASD traits.

Even Ed Psych clearly saw his difficulties in the playground with interacting with his peers but said he was academically fine, so she didn't care about the playground but as such.

But the Comm Paed took the school's report of no difficulties ever...over all others. Both parties claiming masking at school does not happen.

DS was running around upset this morning, as our gentle little old lady cat was following him (looking for food). But despite living with them all his life, our cats are a big source of upset for DS.

I don't like all thus 'opinions' and listening more to school than other reports...All seems wishy washy to me.

I don't understand surely you have a developmental condition or not...it shouldn't have to rely on who you happen to bump into on the pathway iyswim

This is good news Babies, i know it feel a bit doubled edged right now but you are finally being listened to.

know I would be welcomed at the pub (lovely posters) but for the same reason I don't go to the local asd support group anymore. ..I am a poor parent to naughty child, we don't belong there any more

And please get over to the G&C everyone of course you belong there, we even have a couple of posters who don't have children, You have daily challenges that need an ear, like everyone else!

You are so right, it shouldn’t have to be that way It’s bound to make you doubt yourself. It does sound more hopeful that they will pay attention to what you are saying this time though.

And one thing that really shines through everything you say, you are a caring parent doing your very best to help your child through whatever difficulties he might have.

I am cross that I was told the ADOS is THE dx tool for ASD kids and then this cahms man said it didn't matter that DS passed the ADOS....Therefore why bother doing it in the first place !

I am worried enough as I don't know if he needs a dx or not and it appear up to the whim of who we get allocated to at CAHMS.

He read me part of the last doctors report. It implied that they didn't like that I was attending asd support group. Plus made a weird reference to how I filled their questionaire out.

I had no way of photocopying the questionaire, plus it was badly formatted wuth no space for the notes they asked for me to put in. So I retyped it up...didn't take long and meant I could print two copies off. ..One for them and one for me. Plus I could email it to them as it was 100% electronic. But they made out that was wrong somehow....
was I wrong ? Just seemed logical to me.

My DS passed the ADOS. It is not uncommon for HF/Asperger children to do so.

Ok. A diagnosis can help, but what you are experiencing is that the world of additional needs is not all that scientific, despite what the professionals would have us believe. There is no definitive test. There is no choromosome, no marker, no if x then y.

Even if you do get a diagnosis, you are in the same place - there are strategies that may help - but again, different children (with or without diagnoses) respond to different strategies. A dx is a better path to getting some support, but again, there is no definitive support that is guaranteed to work with x, y, or z children. Some stuff might work. Others won't.

Kids with traits, who tick some boxes, not others, are often diagnosed late or not at all. That doesn't mean the same supports or strategies shouldn't or can't be tried with them.

From a parenting point of view, you are pretty much in the driving seat anyway. You can read a ton of things, try some different methods at home. Look around at other schools and see what vibe you get from chatting to their SENCo.

Every single professional you see will have a completely different idea abiut both what they 'see' in ds, and what might be done to support him.

We move every two years, and I have never had a new paed, psych or therapist come up with the same things about either of my two with additional needs. It just isn't that scientific.

My ds sounds very like yours. He's 13 now. At around 10 he did pick up a dx (ADD with aspergers traits). I don't actually think he has ADD (although his distractibility is not in doubt lol) but he has always had Aspergers traits and some stunning sensory issues... We use it as a guideline, nothing more. He still sees CAMHS to deal with social anxieties and whatever more specific problem is on the go at the time...

Babieseverywhere I agree with madwoman. Step back a bit from the dx and look at the child be guided by what the "experts" say and use it to decide what you think are the best supports your child may need at this time to help him. I have been going through assessments with my 7 yo dd1 for the past year (live in Ireland and it is a very very slow process) Initially they thought nothing much up, then felt it was possibly adhd and then decided she may be on the autistic spectrum so she had the ados assessment. We have the meeting with cahms this week for the results of that and I am nervous about it but also know that if she is on the spectrum the supports are pretty poor over here so I am likely to have to source things privately for her and part of me feels I will have more control over it as a result I am planning to use their dx or lack of as a guide on what I need to do for her and it kinda makes it all a little less scary. Go through cahms but don't get too disheartened if you feel you are not getting the answers you would like the dx is irrelevant it is sourcing the right help that is important. Oh and they pawned the "parenting course" option off on me too but I am a facilitator for their recommended parenting course so threw that one right back at them

I agree with Polter.

If he needs a dx, I need to know it.

1. Give me the support that I am not a poor parent...something which currently really upsets me.

1. It would give the school, a chance to be nicer to him and stop giving him bad marks for behaviour he can not control.

1. There is an excellent support group which I can not really attend without a diagnose. They are very helpful and supportive and would not turn me away but I can not go back while I know it is all my fault...which offical it is.

Babies - please do go back to the support group - they will probably have their own stories of "fighting" to get a diagnosis. I feel this strongly as I know so many women who got diagnosed late, and if only they'd had any idea what "it" was they wouldn't have had various "treatments" before.

I can't, I feel a fool at the moment. I am not up to telling them that DS is just a product of my bad parenting

Babies - it is not your "bad parenting", its the stupid system.

Teachers etc. know little enough really about SN, and rely on a diagnosis (they will also be exposed to real bad parenting - and nothing being done - which is heart breaking), some may even have easy children - so have no idea.

Often the paediatricians don't know that much, they are not the real experts with a deep interest in this area. I know this for a fact as the Paediatrician for my area is a long term friend (I was so relieved we got diagnosed via CAMHS when I realised she had moved into this speciality); and I know her CV, there are things I would have no doubt of her expertise in but ASD isn't really one of them.

Finally the leading researchers disagree about ASD, and some even believe that in the "future" we will have a whole different way of looking at such issues. I spend a lot of my time wondering just what "NT" means.

I have 3 children who are on the senior school SEN register, 1 diagnosed at 7 with something I know some Ed Psychs don't believe even exists; 1 because I asked - but has no diagnosis, although she has "failed" tests badly enough to get 25% extra time; and one with a diagnosis of Aspergers (which of course may or may not really exist, but just be ASD). Knowing how to parent children with ASD could have helped me with all three.

'Any' dx can help you access support. It doesn't have to be the right one. The right one may not even exist. At no point did I say not to bother getting a dx. I said that different professionals might have different opinions on what dx might be appropriate, and that even these will differ over time. Despite the best efforts of professionals to convince us, it really isn't that black and white for kids who are potentially borderline. Even those who are immediately diagnosable becasue they happen to fall into whatever diagnostic criteria are in force that year - the profs will differ over what supports could be helpful. It's a game of suck it and see, with or without a dx.

To hang your hat on a specific dx and actively believe that will solve everything is definitely one approach To look at your child, research and try out different things while continuing to seek assessments etc is probably going to be a more sensible approach in the long run. And will ensure that you are actively trying to work out yourself what works and what doesn't, which will help guide the professionals in the long run.

And it is a long run, honestly. Even with a dx the wheel doesn't stop. The umming and aahing continues apace.

And you haven't been officially told it's all your fault, end of. You have been asked to continue with parenting classes, and he is going to be re-assessed at CAMHS. He is still very much on the assessment treadmill. You should be actively discussing this assessment process with school, and going to the groups, and asking them how you can all work together to find out what will help him. Ask the SENCO how she would suggest working out a behaviour plan for school - how this would differ between NT and SN children - what she thinks would work with ds (and offer your input - what strategies have you tried at home, what works, what doesn't work). You don't tell them it's all your fault. You tell them you have been asked to continue with the classes while he is re-assessed by CAMHS, particularly in light of family history.

To essentially hide from everyone until you have a dx is understandable if embarrassment is your main driver, but ultimately it will do your child no good at all. We are all on the roller coaster. Sometimes we have to suck it up and put ourselves out there for a bit of embarrassment whilst we try and find the best thing for our kids.

And mummy is quite right about the lack of knowledge by paeds. I have had paed letters where I have actually called the organisation of the specific disability concerned, because I was so worried about the paed's absolute lack of knowledge (not just lack of knowledge, but she had actually sent me a letter stating as fact, utter fiction).

Professionals diagnosing this stuff is all we have. But it doesn't mean they have enough knowledge to do so, or even that they are right, whatever they decide. Unfortunately... But we have to work with them, and educate them ourselves when appropriate - but in order to do that, you have to have built a good working relationship with them up front.

And 'any' dx will help you seek support. Whatever it is. Right or wrong.

Assessment is continuing though - and an increased dialogue with school would be beneficial - particularly as they are obviously seeing behavioral challenges, whatever they are chalking them up to? If he is getting 'bad marks for behaviour', then this needs documenting, discussing with school, and the info about continued assessment and family history of ASD discussing with the SENCO. Obv I have no background context, but in this case school are not saying no issues. They just need exploring further as school may not be aware that (for example) the child might be using the behaviours as coping strategies or whatever.

I would be exploring that avenue, and then discussing those discussions with CAMHS. You have to keep completing the circle and sharing information - even if the school (for whatever reason) doesn't yet see the relevance.

there needs to be MORE information sharing and discussing, not less? As the op here, I would be using the school (especially if they were the perceived lack of corroboration the first time around). Or if I had completely lost faith in the school I would be looking at alternatives. But the school here do see poor behaviours. For some reason they didn't see them as relevant to the first report completed. I would be looking at that report, and asking to discuss it with the SENCO, in light of the 'bad marks for behaviour'. They can't both present an accurate picture?

The masking thing is obv very common - is there another setting that could be used for the 'behaviours must be seen in two settings' rule for dx? Not all diagnostic authorities play that game tbh, specifically due to the v common school/ home dichotomy.

You will probably also find that as ds gets older, the differences with peers will become more pronounced. It's very common for kids who are not quite different enough to warrant intervention in KS1 to be diagnosed later. By that point you know full well what their issues are, as you have been managing them for years - they just get recognised by others and given a label. It doesn't help when you are fighting for early dx, but it is confirmation of sorts...

Head for school and the parenting group. There is absolutely nothing to be embarrassed about. But you are your child's only advocate - avoiding the issue isn't going to make it go away.

I am not up to telling them that DS is just a product of my bad parenting

Oh Babies! It just sounds as if all this is making you feel so bad inside . But you are not doing "bad parenting", you are obviously parenting your DS the very best you can given his needs and difficulties. And why would the other parents in the group not see you the same way we do, as another good parent whose child’s needs have not been properly recognised by the official system? Most likely in that group too there will be other parents who have been given the run-around, or they will know parents who’ve been in that position, because I’m afraid it’s only too common.

Unless this group only accepts parents of children who have already been been formally diagnosed with an ASC (or whatever), you absolutely do have the right to their support. They are not just being kind, they are doing what the group is for.

I am not allowed to talk to the school Senco only the headmaster. (Unsure why but that is what we were told to do)

School would help if they saw anything but all they see is naughty child....I see a struggling child.

Long term everything will be fine.. I just need to get DS though school and high school. But how to do it.

Has he ever had an IQ test as part of the Ed Psyc visits to school?

I have an 11 year old now with ASD diagnosis, also a bad parent for years - demoralising isn't it.(haven't yet met someone with a diagnosis that didn't go through this phase)

We got our statement of educational need (this was a few years ago before EHCP's came in) even though DS was academically within normal range because I could demonstrate his very high IQ and his potential shouldn't have seen him performing at bottom of the age averages.

I'm sure you've been told this but back everything up in writing. Every meeting, informal discussion that might be relevant. Just send of a quick email to relevant people. Thank you for meeting to discuss x. I conclude the plan of action is... We will review again week x. Regards etc.

Why do you feel the need to tell your support group that one particular avenue has not been supportive? Is it relevant if CAMH's are now investigating?

Okay - so focus on their view of a naughty child. Ask for a meeting with the senco / head to is cuss behaviour management/ behaviour plan etc. the more dialogue the better, really. Or consider moving schools. A lot of parents with sn kids do. Some settings suit some children better than others (and sometimes parents HE because they feel no setting can meet the support needed.)

And I know it's tempting to feel sorry for yourself, I really do. But you are over-egging the pudding. CAMHS are still assessing, ergo the jury is still out. Don't stop using a support group whilst assessments are still being carried out. As M said, it's extremely unusual for a child to just be assessed and handed a dx on a plate. Huge swathes of people who attend that support group have probably in the same place you are. The go-to response is 'take a parenting course'. It's the cheapest course of action and saves any effort being made on the part of the child.

We were lucky in that one of mine has brain damage. It's fairly irrefutable. But it still took two years for an official diagnosis. Until the we swilled about with 'developmental delay'. Um yeah. She has cerebral palsy. I diagnosed it when she was six months. It took another 18 months before the consultant would say it.