Professionals disagreeing on who to see for diagnosis

[Temg]

I'm a bit confused and as DH and I aren't singing off the same hymn sheet right now I'm writing here.


DD had a mild speech delay according to HV who referred her for speech and lanuage. While at the appointment the speech therapist went through developmental checks and she picked up the my DS had some very worrying signs and needed to see a S&L therapist and OT asap.

SO he had his OT appointment (still waiting on the speech) and got a long report that said he needed an urgent multi disciplinary assessment as his dyspraxia and sensory integration dysfunction along with other worrying signs where point towards Autism Spectrum Disorders.

So he is now waiting for a multidisciplinary assessment which is in early next year.

Today I got a call from my GP who read the report today (only 3 months after her got it ) and said he found it very concerning also but thinks that there is s much going on with DS and he has so many needs that he needs to see a paediatrician instead. If I turn down the early intervention team assessment, we will have to pay ourselves afterwards. THe GP thinks that he needs ot see the paediatrician first because if the autism team give him a 'label' it will be stuck, regardless if it is found out later to be not true.

Help!!! I don't know what to do. DH is against all assessments altogether, he sees nothing wrong, he thinks half DS's class and half his football team are worse than DS but DH see's him maybe once a week during the day as he works everyday long hours! I can't see DH agreeing to see the paeds and the EIT. He has already said, if it is all found out to be nothing then DS is going to turn around to us in the future and ask why we put him through it all for nothing.

This is very stressful, and very lonely

 

[Emmea12uk]

Sorry I can't advise you - it must be scarey for you. But, I have noticed how it takes fathers a little longer to accept when there is something wrong with their children. Maybe just a sterotype, but maybe not.

I hope it gets sorted for you - all the best for your family

 

[oldermummy]

Hi, my son is currently under assessment by various professionals as there are strong indicators that he is somewhere on the autistic spectrum.
You have not said what behaviours you son is displaying that have been picked up as concerning.
For my son the first warning signs were picked up by my SIL (who is a hv) she was concerned that his language and his understanding was way behind where it should have been, eg he did not understand (and still doesn't) that when someone calls his name he is suppossed to respond, most people think he is either deaf (he's not) or just being ignorant (he's not).
I took him to see the gp and requestered a referral to the paed and also to a speech therapist.
My husband was not impressed by any of this, and was convinced that nothing was wrong (even though my step son has a diagnosis of Aspergers!).
My son has been seen by the speech therapist and the paed on a couple of occasions, there has been a multi agency meeting arranged for in a few weeks time where it looks as though they will be looking at a dx of autistic spectrum.
Your gp is incorrect when he says that if your son is given a 'label' it will be there forever, but I do think that he is correct referring to a paed.
I would not cancel the meeting but make sure you go along and also go and see a paed(in my area the paed is part pf the meeting).

If your son does have some problems then it is better for him that they are picked up early and addressed especially if he will be starting school.
With regards to you husband I think most men are like this, mine is getting better at dealing with it all now ans even agrees (at times) that there is a problem. It has been 6 months now though since all this has been going on.
If you want anymore info just ask, I have read up so much now about all of this!!!
Good luck

 

[oldermummy]

I would just like to add, generally gp's are not very up to date when it comes to ASD's and are not part of the team to diagnose ASD's, indeed from the info I have read a lot of children have problems for many years before being referred for assessment as many gp's fail to identify significant 'red flags'.
Also speech and language communication is a significant part of the problem for children on the spectrum and therefore a experienced speech therapist is ideally placed to raise concerns.

 

[velvetina]

Hey hun (big hug) I know how hard this stage is, without having this kind of thing going on. Personally, go for the early assessment, I promise you early intervention is the best thing you can do for your son and you wont regret it. Denial on your oh part is very common and understandable but please don't let it stop you from getting early help.

I read an article by a leading paed at a London Hospital the other day, who said she was very worried by the number of children she sees who still come to her without a diagnosis when it is clearly obvious a diagnosis could have been given. I had this myself, my son was clearly on the spectrum and I knew very early (18 months) and when he transferred borough's at age 9 I found out that Surrey had him down as a receptive speech and language disorder. My new borough had him instantly assessed and it solved the issue of getting him a place at a special school.

Don't get me wrong I am not saying we should label children instantly, but I have known many children who have been delayed in being given one which has then hindered their support to early intervention and appropriate school/nursery placement. Ideally a child should start early intervention and be continuously assessed as they progress therefore making it easier to know where to move on to and get the funding to support their needs.

Good luck lovely, good advice from other ladies here. My son is now 13 and he is so different from the toddler he once was, he a tall, handsome, gentle and kind boy and if I had had a glimpse of him now, it would have helped the very dark place I was in, in those early days. x x

 

[Temg]

Hi, my son is currently under assessment by various professionals as there are strong indicators that he is somewhere on the autistic spectrum.
You have not said what behaviours you son is displaying that have been picked up as concerning.

Sorry Oldermummy, I'm just getting back online this evening.

THe concerns are:
*Overly exaggerated emotional and behavioural responses to any chance in his routine or enviroment (so if we go to my parents house over night or go on a holiday DS will not sleep and get very upset and sad and having toileting accidents, and majority will not have any bowel movements wile we are away from home and will hold on and have accidents with bm's also)

* inability to cope with change in routine
*extremely limited eye contact
*behaviours such as lining up toys and object
*poor motor skills
*Speaking with a foreign accent
*delayed fine motor skills
*play skills - difficulty with turn taking
*inability to wait in line

These were picked up in his assessment without us bar the last 2 which she asked us directly about. So at the moment he has been given a diagnosis of DCD and Sensory integration dysfunction they really feel that this is secondary to or part of a wider dx along the ASD.


Thank you so much for your advise. DH and I have sat down and talked about everything and we are going to go ahead with both, taking one thing at a time. I think DH is just displaying his own anxiety and worried that if they say DS is ok and has no problems other than the dcd then we will ahve put him through hours and days of assessments and meeting different people all for nothing and he wil turn around ot us in the future and ask us why we did this to him.

 

[oldermummy]

Hi, he sounds similar to my little one. We have given up taking him anywhere overnight at the moment as he just wont settle. One of the other things I have found is that he doesn't seem to be able to play very well, he doesn't have imagination to create his own games but will play games that he has been shown. His language is not good but he will copy sentences that he hears be them from us or programmes he watches on the tv. He also copies whole scenes from tv programmes.
Since looking into this more I have looked back on how he has been from birth and it seems as though the signs were there from the start. My lovely little baby was a dream, he never wanted anything never cried, even for his feeds.
I am pleased that you and your husband have decided to go ahead with the meetings and appointments I think it is better to find out early on for your sons sake, then you can make sure you can get things put in place to help him achieve his potential.
Here is a link to a forum I am on that has been such a huge help.

https://www.asd-forum.org.uk/forum/index.php?act=idx

Good luck and keep us informed as to how you get on

 

[Temg]

DS also does that with TV programmes!

He comes out with obscure sentances and we are left wondering 'where did he hear that!' until we here it on 'Cars' on 'Monsters Inc'

I know what you mean about the perfect baby who never looked for anything, it makes me feel so sad now.
My friend sent me the 'Welcome to Holland' mini essay, you have probably read it but if you haven't it's worth a google and read as it just is a great way to make sense of how I feel now.

 

[oldermummy]

I have read the poem and yes I know how you feel. At the moment I am dealing with everything ok I think but pushing to make sure I get as much help for him as I can is keeping me going.
My son has a lady from Portage (google them) who comes to see him every 2 weeks, she has been a great help and she helps to teach him things through play, the paed made the referral although I believe that a health visitor can also refer. I also take him to a place called the toy library where he stays for 2 hours and get some speech therapy but also has one to one with a nursery nurse, there are a max of 3 children there at a time and although he doesn't interact with them he loves it there!!!
I am pushing hard to get help in place asap as I have a baby due in March, I have no idea how he is going to react to the new addition or how the hell I will cope!!!!
Have a look at the forum I posted there is so much helpful info on there.

 

[Temg]

Out of all the 'big' transitions in DS's life, the one he found the easiest was DD coming into our lives. He was so protective of her (which we thought was strange but absolutely loved!) He wouldn't let anyone, I meant anyone touch her! He used to scream 'give her back to my mummy, that's my mummy's baby', he would let DH hold her, but sometimes he would start it with him also and he would tolerate my mum holding her for just a min but that was it, no one else was allowed to touch his sister!

They are the best of friends, he gets aggitated when she touches his stuff or puts them out of order but he know's to retreat to his room if he needs her not to touch his stuff now. He hugs her everyday when he gets out of school it's so cute!

He was 3 yrs 4 months when she arrived and I used to read him 'there's a house im my mummy's tummy' and he used to play with my bump while I was in the bath like knocking to say hello, and tell me about when he was in there (it's kind of scary because it is like he remembers every detail, and we have never told him!!). If he ever draws a family picture, I always have a circle on my belly because that's the room himself and dd grew and where another baby will grown one day, maybe a brother (that's his own story!)

 

[oldermummy]

Well I hope he reacts like your LO!!!
He adores his older sis (13) so I am hoping he will adore his younger one too!!!

 

[Temg]

Just a quick update. I just gave in and said I'll let faith decide. When the PAediatrician got our referral he phoned me and said he will see DS after he has had his assessment of needs by the multidiciplinary team. Otherwise he is going to end up sending DS for invasive tests that may not be necessary. Phew, decision taken out of my hands and I'm happy with the plan!

We are in teh middle of the assessments of need at the moment. DS has had the social worker visit at home and the OT visit in school. He has a full OT assessment and SALT assessment next week and then he has a play assessment, developmental assessmenta dn psychological assessment the following week +a 3 hour parent interview.