No diagnosis..what next?

[plus3]

Long story, have been on and off this board and you have all been so helpful.

My DS is struggling at school, and after a long time (from yr1 to currently yr5) he is on the verge of being dismissed from the community paed. Team. She has acknowledged his sensory issues. He has been discharged from SALT after 2 very short assessments (? Social communication issue) and grudglingly gave him Melatonin for sleep (that has been a revelation!)

So anyway. I have done everything I could to help him and have failed. I have been dismissed as an over-anxious mother with a child with sensory issues, tics and quirks. Apparently he will be fine. Which is nice.

School continue to be helpful, and acknowledge his problems with sensory and social communication.

So I guess it's time to pretend everything is fine. Thank you all for the wise words, and the best of luck with your DC.

Check out the tinsley house support threads. Could help?

What assessments have been carried out on your ds? Do you think there is anything you could ask for that hasn't been done? Are school giving support appropriate to his needs? Can you stomach asking for referral to a tertiary unit? I feel for you but don't stop fighting because secondary school is round the corner. Wishing you strength.

(((Hugs))) similar to my story (DS, 9) We have been dismissed with a recognition of sensory issues (no dx), dx of SpLD, and told has 'features of ASD' ( no dx). The thing is it's not fine, is it? The paed said that he does clearly have issues, but not bad enough to give a full ASD dx. Partly because he is bright and 'copes' at school, and partly because I manage him well.

Anyway, we have been referred onto an ASD parenting course, which should be helpful, and I am sticking around on here. Like the paed said tips that help at the severe end of the spectrum, help at the lower end too. Don't go, stick around like me!

(As it happens we are going to see a neuro about DS's tics soon, as they have stepped up a gear. I think we will get a TS dx.....also I plan to talk to him about the ASD non-dx, as it is in another area, and I might push for a second opinion).

If both you and school agree that he not going to manage high school without support , weather it's help academically or with social / organisational , ask them about helping you apply for a statement . You don't need a dx to apply but does help but you get seen by ep which get him on the sen registrar . Also when you going to look around secondary schools , make time to speak with the senco anyway , to see what sort of support they offer him . Even with statement first so much money comes from the school now anyway , so they will have some funds available to support him.
Yes dx is great to have but most important issue is being properly supported within the school environment . Which you can get without .

Plus3

Community Paeds are the jack-of-all-trades in the paed world (and the master of none). Some wouldn't recognise a case of ASD if it was tattoo-ed on the kids left buttock! Being described as over-anxious parent is something that many of us have been labelled with when the medics are at a loss.

What I am trying to say is - do you accept this non-diagnosis? I wouldn't. If there has been sufficient concern to have warranted a comm paed referral, SALT and melatonin it suggests that there is something more there to be explored.

I would definitely ask for a referral to a psychologist or to a paed who specialises in ASD and other sensory issues.

Personally I think that comminty paeds a bit like taking a car to Kwikfit. OK for your average Ford Mondeo, however my child is much more complex and needs the specialists in the Porsche garage to work on them.

Thank you all.....am I ready to accept the non- diagnosis? I want there to be nothing wrong, but I think most of the family think he probably has Asperger's.
mrsbaffled "he's bright, mostly copes at school and I manage him well".... So so true. The dr actually suggested I stopped managing him well to see what happens

I just don't know. Maybe I will look into ASD parenting course - I worry about him turning into a cross teenager. His tics are anxiety driven, but I can't protect him forever.

The course we are doing next week is NHS, but I saw one advertised at the doctors out of county as a private one.
I have read loads and loads. I think the more informed I am, the better. Also I think DS is calmer now I treat him as bring on the spectrum (even though dx days otherwise).

Is there a support group for parents of children with Aspergers in your area? I attend my local one and we often have parents in a similar situation to yours come along for advice. Some of the other mothers have been attending for more than 10 years and know the local set up inside out (and between them have been on all of the parenting courses) . What they don't know isn't worth knowing. It might be worth looking into.

That is good advice. I have never been brave enough to attend anything local by NAS as I feel a fraud with no dx :(

Wet is right, comm paed's wouldn't know ASD if it slapped them in the face, particularly HFA!

I was told by several comm paed's that ds 'was too bright to have ASD' and such like for years.

When ds was referred to a Paed who specialised in ASD, he knew within about 10 minutes of meeting ds that he had ASD and referred us onto the CDC.

If you can't get a dx can you get things ruled out? If its not asd then why? Spell it out so that your happy its not asd, asperges etc.

sorry was just feeling sorry for us all..

PolterGoose you are right of course.
He does see an OT - she is the only one who has actually helped. He had retained reflexes, significant problems with his eyes (much improved now with lots of input) loves being squashed and spun (sensory seeker, noise avoider) he sleeps with a weighted blanket.
I know nothing about DLA, but can't imagine we would qualify for it. The only thing ruled out is ADHD - I think the sensory stuff is often mistaken for ADHD, but the Dr was sure he doesn't fit that profile and the school have accepted that.
I just didn't want him to fall behind academically and grudgingly went along with the idea there was something wrong. The OT appointment was totally eye-opening, and as he has grown up, some of his issues have become more apparent. I have switched from being annoyed that school was suggesting there was something wrong to being anxious that the right thing isn't being supported properly. ho hum.

Does he not have ASD but should have a diagnosis of sensory processing order or dyspraxia? Lots of things overlap. Keep chasing even if you have to go for a process of elimination! SPD in younger children is often mistaken for adhd - DS had to endure an adhd assessment four times before his spd diagnosis because teachers in different schools had never heard of spd and in my old area they are given too much influence over stuff that should be just medical.

many children (like mine!) end up with a kind of "olympic rings" profile for a diagnosis.

Also education law says that support at school is NEEDS driven, not dependent upon diagnosis. I've had Tribunal back me up on that one so don't give up.

Well that is what is confusing me bochead - school were the first to say he had SPD - which was confirmed by the OT. We then went through a year where one of his teacher's and Ed psy thought it was ADHD (I was adamant it wasn't) so that's when we went to the community paed team. He has had multiple observations etc, ADHD was ruled out but then the social communication aspect was raised. I then started to get worried about ASD, and when I spoke to the OT she admitted that SPD isn't a stand alone diagnosis and usually co-exists with ASD.

I do think I have added 2+2 and managed to get 5....in the meanwhile working myself up into huge anxiety about it all, but when I look back so much now makes sense (although I didn't really acknowledge it at the time). I don't think he is particularly rigid but so many aspects fit him regarding Asperger's. He would just be on the lower end of the scale.
School still think he has a problem with social communication & are seeking help for strategies they can use with him

I don't think they recognise Spd as a condition in my area. DS1 has it..recognised in letters and reports, but no dx was ever offered to us. We were given a booklet to read as the wait for OT is several years.

School hear me saying stuff about sensory, but it is in one ear and out the other as it isn't 'diagnosed'.

He could have social communication disorder and sensory processing disorder rather than full blown autism? Social communication disorder is now an official diagnosis in it's own right and usually means a child satisfies the criteria for only one or two aspects of the ASD triad. Go back to the diagnostic team and ask them why your child wasn't given this "lesser diagnosis" of scd when his school have identified clear issues in this area.

Either way sensory issues are why my son failed in 3 mainstream placements and why he's now homeschooled - they aren't minor so need addressing.

The OT put in place a sensory diet for DS & I got it written into his statement . The issue I then had was a school that chose to ignore their legal duties as per statement and the fact that there is no way the average comprehensive could implement what's needed.

Assuming your school is decent but unaware the route to follow is the statement process before it becomes obselete next year. This will mean the OT's advice becomes legally binding as well as any help you may need from ASD outreach/SALT.

Don't give up - I spent from age 2 - 8 being told DS had "complex needs" but noone would sit down and define what those needs were as he crashed and burned time and time again. We got there in the end and so will you.

mrsbaffled I will admit to finding a private OT because I wasn't prepared to wait the 3 years we were told it could take on the NHS. On the other hand "the out of sync child" book has been marvellous & I read it regularly
The 1:1 SALT review was helpful, but when they saw him in school they literally spent 20 minutes, spoke to a teacher (who had only taught him for 6 weeks...) and discharged him, with leaflet advice for the school!!