Undiagnosed

The NICE Guidelines are not yet law.  They should be following them as they are NHS guidelines but they aren't enforceable yet.  I think there are moves to join children's autism rights with adults as per the Autism Act.

Having said that, the more a parent shows their NHS service that they are well-informed the more they are likely to take you seriously.  They will not want to be seen to be breaching best practice guidelines.

Look at how services ignore the Autism Act - which is why now Think Autism has been put in place, let's hope it works.

Hi,

thankyou for all your replies.

I suppose we have had a provisional diagnosis from the Educational Psycologist written for my sons statement. We have had some support (from respite care and the adaptations team have put up some safety gates in our home) even without a formal diagnosis from the local authority diagnostic team.

 Over the Easter holidays i struggled with some of my sons behaviour and I am just drawing breath now he's back at school.

My son doesnt use words to communicate and this leads to confusion on everyones part. As he's got older he seems less flexible and more likely to meltdown.SLT have said that they think he is ready to use PECS and we waiting to hear..... i think because he is stronger and bigger I find his meltdowns harder to manage and I wonder if he will eventually slip out of my grasp and under a bus or into the road. i feel that I'm scared of going out with my son (5yrs) and his sister (7yrs) because i end up running down the street after him or wrestling with him on the kerb or repeatedly putting his clothes back on when hes taken them off in the street. We also struggle with incontinence at times. We recently redecorated his room and now it is trashed.

Intense World I'm not sure why they have these NICE guidelines as noone seems to have read them, they dont seem to have made any difference. i am pretty sure that I am not the only parent who is in this situation. I could look into private diagnosis but the cost puts me off. Its all a big learning curve for him and for me!!

NAS10051 said:

Hi,

I am new to this site and wondered if anyone has had a similar experience to my own.

My 5yr old son has been on a waiting list for asd assessment for a year now. We have recently started to get help for his needs through a disability team. We have recieved help through SLT and education psycologist and are awaiting a statement for him at school.

I recently rang the team that carries out assessment for asd and they said my son still has a long wait for diagnosis ( i think they are talking years). Has anyone else had a similar experience? I find it difficult to work out my sons level of understanding at times and on bad days when I'm feeling the strain I start to really doubt my own parenting. I wondered if diagnosis would give me a clearer understanding of his needs.

This is the time to start quoting requirements to them and putting complaints in:

http://www.nice.org.uk/nicemedia/live/13572/56428/56428.pdf

"1.5 Autism diagnostic assessment for children and young people

1.5.1 Start the autism diagnostic assessment within 3 months of the referral to the autism team."

If you show them you know your rights they should start listening.

Hi floralgum,

   I have two boys on the spectrum and yes it took a significant time to have them assessed also. Given what I know now; if I had my time over, I would probably have had them privately assessed for ASD whilst I was on the waiting list for the NHS. My last boys diagnosis took so long that he wasn't supported by a statement untill he was in the second year of seconadary School. Far too late.

The first lads diagnosis was a shock and I was just left to get on with it with little advice. For the second child it was not so much of a shock, however I've always just managed on my own with it. I did little research until recently. (which was probably me in denial) but it seems i did become overwhelmed.

My experience of private assessment in other areas OT, ED Psych etc is that although the needs are assessed in similar ways, the suggestions put forward to help the child manage those difficulties, seem much more in depth. (Only personal experience you understand.) Which is why i'd probably do it differently if I had the time over again. I'm pretty sure an independant diagnosis would speed things up. At least you would not be left in limbo and one hopes that any statement would take into account those findings, even if they are not produced by the NHS. Indeed it could be merely a formality if an independant assessment finds he has ASD. Perhaps you could ask your GP. The downside of course, is the cost. When I had my son assessed by an Ed Psych privately, I had to take it out of my mortgage money. However, given that I had an LEA unwilling to assess, I had no option!

I guess what i'm trying to say (probably quite badly.) is that coping with a child on the spectrum can often be challenging. Different children with the condition cope in different ways, as my two boys have proved to me. No two can be supported in the same way even if they suffer with the same difficulties, but any support comes mainly from learning what works for your child. Irrespective of a diagnosis, he clearly needs support and by having him assessed you are doing exactly the best thing for your child. In my opinion early intervention is key when looking for a statement and the sooner you have that info, the easier it is to move forward in Educational provision terms.  One of my sons got early intervention, for the other it came too late. 

Don't doubt yourself, you are doing a great job. If you feel diagnosis is important to move forward, then go with your gut feeling, but be sure that diagnosis alone is no all you get. Reccommendations to support your child are very important.

Regards Coogy