Proper dx... still unsure at the best of times!

[mysonben]

I am a fool.
Part of me want to go through all the multi-disciplinary asd assesments at CAHMS and them to say 'yes your DS definately has asd', this would bring closure to the endless rollercoaster of emotions with 'is he ...isn't he?' And hopefully get more support for DS in the near future at school.
On the other hand, i'm petrified of all these assesments, of what they (CAHMS) will say, i stress no end each time we have a review with the paed (who is nice btw!), so god knows what it'll be like to see a whole new team!
I totally hate these asd related appointments, i hate reading the reports that we get.
Some good days i think DS is too mild to even get a dx and that the whole thing will be stressful and pointless.
And on bad days i think DS needs more help, we need support re:his behaviour, and that the dx is the only way forward.

Yesterday we received our copy of the letter the paed sent to CAHMS about his referal for asd assesment.
It was all there again in black and white, DS 's issues and problems , and in the concluding paragraph it says DS 's clinical history and presentation is strongly suggestive of an autistic spectrum disorder, but that his case isn'it clear-cut.

My DH and my mum thinks the assessments are the way forward, but i'm still unsure, i'm not in denial! I know DS is 'spectrumy', but i'm scared of the dx process, i don't know if i can handle it all, and if in the end it will be worth anything good for DS.

Had sent you a fb msg before I read this so have sent you another one including my reply to this thread lol!

Didnt want you thinking it had gone unread

this alls sounds completely normal, FWIW I could have pretty much written that post word for word in the run up to DS's assessment. Unfortunately the resources in the system are so limited that whilst a DX doesn't exactly guarantee anything, it should at least help make sure his needs don't get swept under the carpet, and help you access support groups etc, and possibly help claim DLA/apply for statementing etc.

We are not as far through the process as you. I'm afraid I don't have any practical advice, but I'm going through much the same thing at the moment and wanted you to know you aren't alone.

Before going to the GP I was sure I wanted to try for assessment/diagnosis. I could see ds1 struggling and his school work sliding and I wanted to do everything in my power to help him. It took a lot of persuasion to get DH to agree and then I took a bit of time plucking up the courage to make the GP appointment. GP was fantastic, has a child with similar problems herself and was happy to refer immediately. We also booked an appointment to see ds1's Headmaster and he couldn't have been more helpful either. Then the appointment to see the Paed came through really quickly (appointment on 5th January) and I could feel myself starting to back-track and panic.

I have since found that it all keeps spinning around in my head, feeling/thinking that he is not bad enough to get a formal dx and so its not fair to put everyone through the whole assessment process. I've explained his behaviour away to myself in a million different ways and found myself actually avoiding the books that I was reading (and finding very reassurring) prior to the appointment letter arriving.

I think part of it is fear of the unknown (ie I don't know what is going to happen at the appointment and where this appointment will lead us to next) so similar to you in that I am scared of the dx process and part of it is me worrying that I am simply wrong about him being on the spectrum and will therefore end up being told that he is actually nt and I am just a bad parent.

To cap it all, I have had to admit to myself this week that I have a rather nasty case of PND which is seriously affecting my mood and judgement and I'm worried that CAMHS et al might think ds's behaviour is down to him having a depressed mother rather than anything actually being wrong and therefore not look any further than that for an explanation of his problems. (I would be so upset if that happens as I have only slipped into PND in the last two months and ds1 is almost 8 years old.)

Sorry, I'm not helping much am I. I guess I just wanted you to know that you aren't alone in how you are feeling. From reading other threads on here in the past I think we are fairly typical of parent's whose dc's are going through the dx process.

I am just going to try and take it one day/appointment/letter at a time, put one foot in front of the other and hope we get through it ok and come out of it with something that will be of help to ds.

Agree with Total, this is exactly what we went through prior to dx. Once ds2 was dx, although, it broke my heart, it gave us all a point to move on from and we very clearly knew what we were dealing with and could access help accordingly.

We have continued to build on that even though it can be a fight at times x

Hi Mysonben - I haven't got an awful lot of advice but I can say I felt exactly the same as you (DD 3.6 diagnosed with ASD earlier this month).

I hated the reports too they are thoroughly depressing. Nursery SENCO told me though that they have to mention symptoms/problems in a negative manner in order to get LA to acess for a statement.

Maybe it is the same with the letter your Paed sent to CAMHS - He had to make it sound negative in order for you to get an appointment with CAMHS?

It could be worth looking into what extra help would be available diagnosis - vs. non diagnosis.

With DD she will be attending a social skills group but if honest I'm not sure diagnosis was absolutely essential for this but I'm sure having the diagnosis probably pushed her further up the list.

Nursery have also acted quickly in starting the statementing process once they heard we had diagnosis.

Like you Mysonben I still feel is she - isn't she. 3.6 seems so young for a diagnosis she is still developing although I accept she is significantly behind her peers.

Good luck in whatever you decide

Also, you are not a fool - confused maybe but not a fool

Thank you ladies for your replies.
I see i'm not alone having these contradicting thoughts and feelings. I think it is just a hard thing to swallow i mean this whole asd issue, DS and his problems, the dx process, and the unknown yes too.
Deep down i know my DS isn't an average typical child, and he is delayed in several areas, also if the paeds recommends a referal then we should do it, because in the long run when DS gets older his needs at school may increase. We just don't know.
I so wish we could hear them say 'no your ds is absolutely fine, he has not got asd, it is all a mistake he's just delayed and will catch up...' but the niggly feeling inside me says otherwise.
So even if i have these wavering thoughts about dx, it is probably best for DS to be seen and be fully assessed, no matter what the outcome of these assessements may be.

Moosemama, that worries me also, these psychologists looking and asking questions about our parenting.
I stress so bad during appointments i come up in a blotchy rash all around my neck , so will make sure i wear a scarf during assessments , don't want them to think i'm an overly anxious mother and its rubbing off on DS.

when I went through the dx process with DS, (albeit not with CAHMS, though an ed psych was there as well as paed and salt) there really was very little interest in my mental health history etc, other than as part of the family health history - noone was looking to pin it on me iyswim.

MSB you are a FANTASTIC mum and no one is going to look at you as the cause of anything so please don't doubt yourself. You don't give yourself enough credit

I have only has a sec to read OP, but wanted to share with you. We didnt get a formal dx for DD1 in June, as everyone was doing well. However, this was a huge mistake. Now we are fighting to even get an appointment for an assessment because we didnt know that in Herts if you dont have a full dx, you dont get any help. We manage fairly well at home but we have a lot of support and I only have 2 dds. School is a different story this year, and they are failing her on so many levels. We have now been referred to CAMHS and been told it will be atleast another year before they will see us for another assesment. She will be 8 by then

DX is hard, and as a parent we dont need it, we know our children well enough to know how to deal with things most days and love them whatever. However, dx helps others understand and know what support to put in and funding too.
It wont make much difference to you i think but will help elsewhere.
HTH

Arghhhhh!!!!
My sis takes the biscuit, i was trying to tell her of my conflicting feelings about the asd assessment procedure, the possible outcome of the dx,...as you ladies know it isn't an easy nor happy path to follow.
She replied something like 'ohhh!fgs get a grip and stop bugging us about this dx thing. All a dx will do is bring your DS a better comfort of life'....

WTHF! She has no idea and is talking utter crap! And just cannot put herself in my shoes.
My mum is supportive but doesn't fully understand, she still believes that DS will suddendly become 'normal' by the time he start junior school because she read in one of her woman magazine that asd is worse in the early years, and she saw on th tv this man with AS who could speak and acted very normal! (her own words )

You ladies are the only ones who truely understand and can relate.
I wonder why i waste my breath on relatives!

"DX is hard, and as a parent we dont need it, we know our children well enough to know how to deal with things most days and love them whatever. However, dx helps others understand and know what support to put in and funding too."

very well put

Do I recall rightly mysonben that your husband is a very private man and has had to really draw deep on his resources to accept the DX process? Might it throw him a bit if you didn't go ahead now?

Linglette, yes it took my dh quite a few months to come round to the idea that DS'problems are due to ASD.
And right now when he hears me saying i'm not so sure getting a dx is the right thing to do and see me back pedalling, he gets quite annoyed, rightly so i suppose.
He, however is now determined a dx is the next step forward, and is ready to fight to get a dx , more help and a statement when the time comes.
He says if we don't do now, we could come to regret it later.

We will do it, it takes so blooming long for the ball to get rolling that time shouldn't be wasted.

Thank you for all replies.
I need a little kick up the backside sometimes to get me going ahead

yeah, he's come on this journey with you and made the commitment...............(he sounded so sweet!)

'Part of me want to go through all the multi-disciplinary asd assesments at CAHMS and them to say 'yes your DS definately has asd', this would bring closure to the endless rollercoaster of emotions with 'is he ...isn't he?' '

mysonben Don't bet on this happening

'And hopefully get more support for DS in the near future at school.'

Don't bet on this happening either. What a dx does is gives you a tool to begin battle with.

I'm sorry to be negative, but early intervention is key and the sooner you can make sense of it all, have realistic expectations rather than false hopes, and start moving forward, the better it will be for your ds.

Having said that, a dx isn't right for everyone. I think the key thing is whether or not you have the ability and resources to ensure your ds' needs are met without one. For a lot of us, whilst we don't much like the dx process or the labelling it is the only leverage we have when fighting for help.

hth