Educational Psych advises against ASD diagnosis

[Missisdoyle]

My DS is 4.5 & starting primary school in Sept. His key worker at his new nursery had noticed 'unusual' behaviour (meltdowns, lack of age appropriate pragmatic speech, lack of social skills,stringent need for order, excellent maths/ English skills etc) & contacted the ed pych. Spin on 6 months & her advice was against diagnosis, as 'labelling is problematic later on' . She says he will get extra support at school & thanks to her, he has an extra 5hrs a week help, without diagnosis. I am really confused, though ! I get that labelling could be detrimental, but surely he would be getting more help, after a formal diagnosis ? We have just started to send him to a private SALT, which is v expensive, but the NHS waiting list is so long, we feel early intervention is best. This SALt has agreed with me that he has pragmatic language disorder, but he says that the NHS do not usually have funds to cover this type of disorder. He mentioned that this language disorder isn't usually diagnosed anymore & he claimed a peadiatric diagnosis would help DS ! Both professionals used the term, ' higher functioning autism'. I am v confused by all of this. Has anyone else had similar experiences. My DS needs this SALT to improve his difficulty with pragmatic language. I think even if I have to get a loan of the bank ,it is worth it. He is such a bright & loving child, he gets so frustrated with his lack of conversation. He can recite adverts, tv progs, films, songs, word perfectly & reverts to this chatter ( a la Rainman...) It is my dearest wish he could learn to express his thoughts better& converse. Is this possible ? Can a child learn pragmatic speech ? He can be so funny in a physical way & has friends at nursery, but I woory so much for his future. I would be so grateful to hear some success stories. Thanks & sorry for this big post !!

mississoyle I have the language for thinking book if you'd like it? DS and I have worked thought it now and are working on higher level pragmatic language so it's just collecting dust!

I agree with polter in label Vs diagnosis.

I also agree the ed pysch is talking rubbish! My DS got a recent dx and it's been recommended he attends some local NAS sessions for skills support. He wouldn't have access to that with the dx - therefore probably lowering his potential outcome rather than the dx putting a barrier on it.

Zzzzz, I feel you have gotten the wrong end of the stick ! I'm not sure why you would think that I'd "prefer" a dx of PLI over a dx of ASD ! Why anyone would prefer their child to have one disorder over another strikes me as somewhat bizarre... The SALT had agreed with my suspicion that DS has PLI, not my preference, it is a fact. The reason I have posted this message in the first place is to make some sense of a very confusing situation & conversation with the EP, who bandied around the term, "higher functioning Autism", yet advised against a diagnosis ! I wanted to gain insight from this confusing & worrying situation from fellow Mums, who have more experience & knowledge of such things. And no, as I have previously mentioned, I have never wished either of my sons join the army, that was an example of the EP, explaining, in her terms, why she would advise against dx !! I believe that paying for a SALT is something positive that I can do for DS,now, as I have read early intervention is crucial in order to help him. I'm not sure why you would consider that to be a negative... I pray that it helps him.

Youarekiddingme, thank you, that would be great. That is very kind of you. Did it help you & your DS ? Any info is so welcome.I just need to make sense of all of this. My mind is all over the place at the mo !!

I think if you can afford the SALT then go for it

We all know that early intervention is the name of the game, and once these early days are missed you cannot get them back.

And in any LA it takes time to get an EHCP.

Your LA is using an EP who is at best a bit wacky, and at worst denying DCs their legal rights in order to please the employer. So I fear it may take some time (and maybe starting an appeal to Tribunal) before an EHCP with specified SALT.

LAs tend to prefer "SALT embedded in the curriculum". I gather from independent SALTs that the "embedded" bit is important, but for many DCs is only effective if the "embedded" part is done alongside small group social skills lessons and/or 1 to 1 therapy with a qualified SALT.

Oh, and my lovely relative who was diagnosed in her 40s said "it is nice to know, after all these years, that what separates me from my fellow humans is not, in fact, my fault" That was a lot of years she had blamed herself for not being mainstream, but she is strong and happy now.

Good Luck

Zzzzz, I just felt you seemed to be having a go ! Sorry, my head is fried at the mo, but I gather from your post that you have been there & know exactly how frustrating, confusing & down right scary this dx minefield is ! Your advice is welcome. I am just being a mummy lion at the mo ( & have a scorching case of PMS !!!)

And I should add a big thank you to all of you kind mummies that have given me sound advice. I am going to try for a dx, on the strength of that. I wouldn't have had the sense to do that before. Thank you.

In our case we didn't get far with people dx ing asd. Still waiting for the nhs to properly look into it 5.5 years down the road. Went private in the end but not telling the nhs that - I'm still waiting on them ;0)

With my toddler he was dx ( diagnosed) at 3. I felt better to have the dx then remove it if needed ( living in Denial)

I have a son with a lang disorder. A very bad one. Private salt has helped him. She thought him to word around it. Nhs salt says he can now mask some problems. So nope not cured but has some tools to work around

I found the language for thinking book did help my DS. I got it as it was recommended here by many posters. We use the ungame cards now as DS is 10. The book is aimed at 3-7yo and he's only just completed it to a good standard.
Pm me an address and I'll send it on - by all means ask you salt advice on whether your DS would benefit from it first if you like. Don't feel the need to PM me straightway - it's yours if and when you want it.

Missi these boards are really good at mutual support. MN should be very proud of the posts on this one.
From time to time you may see "honks" and "flaps" which comes from this post:-

"I came across this earlier and it summed up the way this board has helped me.

Fact 1:

As each goose flaps its wings, it creates an "uplift" for the birds that follow. By flying in a "V" formation, the whole flock adds 71% greater flying range than if each bird flew alone.

Lesson:

People who share a common direction and sense of community can get where they are going quicker and easier because they are travelling on the thrust of one another.

Fact 2:

When a goose falls out of formation, it suddenly feels the drag and resistance of flying alone. It quickly moves back into formation to take advantage of the lifting power of the bird immediately in front of it.

Lesson:

If we have as much sense as a goose, we stay in formation with those headed where we want to go. We are willing to accept their help and give our help to others.

Fact 3:

The geese flying in formation honk to encourage those up front to keep up their speed.

Lesson:

We need to make sure our honking is encouraging. In groups where there is encouragement, the production is much greater. The power of encouragement is the quality of honking we seek.

Honk, honk... honk, honk, honk...... honk, honk... honk, honk, honk...... honk, honk..."

Yes we are all slightly cranky sleep deprived and a bit at the end of our wits some days.

Do stick around. I have learnt so much here. So if things seem a bit abrupt it's because it's just nice to hear something straight.

The key thing with any if this is finding your own way. I don't think I would lightly advise anyone to follow my path, but hearing everyones own journey you can decide if it would work for you.

Can I ask a daft question ? The EP kept repeating that DS was probably on the very higher end of the A spectrum. Does this mean he is less likely to get a dx ? V confused...

Could mean that's he is at the bottom of the spectrum or in the grey area in between.

Take it with a pinch of salt as I'm sure it isn't a EP remit to diagnose anyway. It was the NHS salt who told me my son had asd but she didn't diagnose, it went back for a MDA with his peadiatrition.

You can have a very high iq and low social skills or visa versa

Or any possible combination in between. My older boy has very adverage / high cognitive ability but his conditions do impact his life a lot. Looks like he is in the Gray area so that doesn't mean for him it's a minor issue. But another child it could be minor. Right now for him it's really causing him issues with processing information which puts him in danger

I'm sure someone can explain it better.

Thanks, 2boys, you say your older DS has high cognitive ability, but his condition affect him a lot. Please don't answer if you find it too impertinent of me & too personal a question, but has your DS a dx ? I gather he is at the higher end , from what you have posted. My DS has quite a higher than average intelligence, yet has fixations, rituals, sensory overload, anxiety issues, limited choice of foods his will choose to eat, melt downs, transition problems & in addition, at the mo the full moon &, changing of season always affects him( sleep\mood wise). Plus his pragmatic language impairment, which the SALT has said he has , which leads to poor social skills. The EP said he will probably "be an eccentric adult" - he is a pretty eccentric child, but he still needs a lot of extra support !! ( I am just waiting from a call fom my GP to dicuss getting referral...) Seeing EP, key worker & outreach worker tomorrow to discuss where we are up to. Do you think I should mention about getting dx ? Sorry for lots of questions & thanks, again.

Thanks, so from what i gather, you are saying it will not matter with the Ped, which end of the scale he is, it is how well he functions, on a day to day basis. If I may ask, Poltergoose, does your son have meltdowns st school, & how do you find his school assists him. Do they support him well ? How do other kids "get him" ? My DH teaches at quite a "challenging" higher learning college & he has found that although his students( 16-19) are from "deprived backgrounds" & have challenging behaviour, they seem v sympathetic ( don't tease) kids with SN. Just wondering how your son finds his peers...

My older ds won't be diagnosed with asd it seems ( went private on Friday so not got the required input from school yet) so he has some asd traits but seems to missing key traits hence not on the spectrum. He's in the Gray area below. I do wonder if he starts to struggle more socially as he gets older he might move out of that Gray area. However I really don't know if that's a possibility.

My son has high cognitive ability but he's got a language disorder so although he might know what you asked him, there is a delay in his answer so he is struggling. He's a dyspraxic child so there seems to be general problems with his wiring as physical things are hard as his ability to process things like crossing roads. So in his case his higher iq isn't making him a genius. The other things he finds hard overwhelm that iq.

I must say that my son is very complex. He's doing ok at school right now but no one can understand how.

What I try to do is not read endlessly on dyspraxia or asd. I just look at where my boys struggle and focus on how their conditions effect them. The younger one with asd is not like any other child with asd I know.

Some people I tell he's got asd and they say he can't be, but he is. They all have their strengths and weakness.

I always thought the older one had asd but it seems not.

I always though my first born was neuro typical but again it seems not!

One thing to bear in mind is that you have to take everything one step at a time. Don't think too much about severity or where he could sit on a scale.

I've just had my DS dx letter today.

Of the 5 areas he has 2 of significant need, 2 moderate, 1 behaviours observed by school, ed pysch and mum - more clinically significant at times of stress - not observed in ADOS.

It's not black and white.

Interestingly it was noted that his clinically significant asd behaviours were emerging as evident from aged 2-3yrs. The time he was the most placid child who's ever existed (and completely barmy!). The time I first accepted something wasn't quite 'right' and the first time a 'professional' pooh pared my concerns.

Good luck with meeting tomorrow.

Missis my ds wasn't diagnosed until he was 10 and even then only because he had developed very severe comorbid OCD so I am always a bit reluctant to intervene on threads about little ones.
However if you can see that your ds's difficulties fit with ASD and nursery say the same ( and after all you and nursery know the real ds in a way no prof ever will) then I would definitely do all you can to get a diagnosis.
It will help with services though they are never enough. It wiil help with understanding from others although you will always get those who can't or wont' understand. It will help your ds understand himself as he gets older. And I say that even though my ds, who obviously was old enough to understand the dx from the beginning, hated the idea for years and is really only now at 18 coming to terms with it.

Oh and i only discovered this board when he was nearly 15. Life would have been much better for us both if I had had it earlier.

Thanks for that, No Haudin'. One of the things that has been bugging me about the EP's view, was that she seemed to be of the opinion that a dx would label him as 'autistic' - but my feeling has been, if he is, surely it is a better way for him & his family to understand it better & support him better. Ep said he will get as much support & funding without dx, as he would with. After reading all the posts from these kind mummies,the general( experienced )consensus is he would not get as much funding without dx...(loving your name, BTW !! Guessing you must be from north of border )

Thanks I am but living in England now.

I have found that there are some professionals who react negatively to some dxs or disabilities themselves and therefore assume that everyone else wiil.
I am not the only parent on here to say that the dx actually came as an enormous relief.