I feel sick after visit from HV regarding DS's DX

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As you mostly all know DS was dx AS a couple of weeks ago (privately). HV came round today who I have spoken to many times on the phone but never met in person (she is a new HV working with my previous one). Anyway she is nice - I am not saying otherwise. But I feel so upset now. She doesnt think DS is AS. She thinks he is a genius. Fuck it sounds so stupid. And anyway they arent mutually exclusive. But he is in a great mood today so none of the negative stuff I have been posting about. She was here an hour and a half and just said he was a delightful child (yes, I know!) but clearly a very high IQ and years ahead of himself with regards to comprehension, speech etc. Now I am not complaining about this - I am upset - no - devastated that everything we have been through has been reduced to high IQ in an hour. What about the repetition, the melt downs, the everything? Really the everything? Is it all down to being very bright? I just feel... robbed of my security that what I am doing is the right thing.

She said perhaps he will need something "better" than his preschool he is about to start, or something different and none of this makes sense to me.

She is chasing again the referral to get the DX on the NHS but she said when we go to see the peadiatrician if he looks at DS and sees a normal delightful little boy it will go no further. How can this be? How can one appointment negate everything I have been through?

Is this normal? Have you all been through it with your children? Am I doing the right thing?

I would put far more faith in what you and the doctor who diagnosed yr son say than the hv. Go through with the referral and see what happens

The DX was over the phone with a private doctor - with me detailing exactly what happens in our house, literally everything. HV said if that doctor had seen him in person she wouldnt have said it.

I would say don't listen to her. She is a HV, she is not qualified to diagnose AS.

Just keep doing what you're doing, and I would just wait until you get seen by the NHS specialists who see AS all the time and whose job it is to dx it.

Good luck,

HVs do not know better than a proper diagnostic person.

Sounds like you need a good cuppa.

Yes, you're doing the right thing, honest you are.

HVs and GPs are not infallible, and are not expert in SN. I am a little surprised though that private psychologist was prepared to DX just over the phone without seeing your little boy - not because I think your HV is right but because imagine if you got a parent who was lying about their child's symptoms/abilities.

btw HV and GP both fobbed me off as a neurotic over DS speech problems, when he turned out to have a severe language delay! So I can imagine with even more subtle problems there is big scope for them not to get things wrong.

please carry on with going to the pead your hv saw him what 20mins? they have no idea tbh yes hes bright and ahead of his years so is my son hes AS as iv said befor, they will do lots of assements ask you the right questions they need my ds teacher still insits ds as not got aspergers and shes the senco teacher told our pead who went in to school thinks ds will row out of it lol!!!!

My HV said th was no way ds2 could have autism, as when she came to see him, he was staning on the rug refusing to go on the cold wooden floor "Because autistic kids can't tell the difference beten hot or cold" Apparently.

This is the same woman who told me that I should take ds3 out for a walk each time between feeds if going out in his pram is the only way he will leep during the day!

Some HV are excellent, and there are some crap ones. Looks like yours falls in to the latter.

Keep your appointment with the paed, go with your heart, not your silly HV.

I am definitely keeping the appointment and I will pursue this as far as I have to. I just got very scared. She basically said that if the pead sees him as she did it will go no further. I just feel like my word isnt good enough, when I have been the one caring for him 24/7 his whole life. And I am scared we are in the control and whim of people and I dont know who I can trust is getting it right. And its my son.

Why cant it just be AS and high IQ? I dont get it.

Thought you would all find this funny though as she was leaving I asked DS to walk her to the door with me he said "No (DS) just sitting here" so she said "can we shake hands?" and he said "no, DS playing with cars" LOL

Then after she left he pushed a button on a music thing and I said "you set it off!" and he said "no mama its on!" then pushed the button again and said "now its off!"

Then he hit me later about something unconnected and he said sorry in a really annoyed tone of voice and I said (really joking) are you really sorry or are you just saying it? he said "I'm just saying it" LOL gotta love him

HV is organising 1 on 1 something or other with him... someone to come to the house at set times each week, routinely, to do structured play with him. To increase his attention span and help him learn more. I guess thats a good thing.

I once had a HV who felt able to diagnose anything because her husband was a GP . I also know a couple on a personal level and they are certainly not qualified to diagnose.

HIDL: Did she drink coffee and nod sympathetically, maybe head tilted to one side and a raised eyebrow?

You live with him, HV doesn't.

Could you perhaps keep a diary of observations to take with you to an NHS assessment? At paeds request, I had to keep one for six months, which I did dutifully but it wasn't needed on the day because DS was having a full-blown ASD day which they couldn't deny.

you have these moments of clarity. I had one today. I think we are going to be in the middle of two camps the genius camp and the ASD camp. I'm not just saying this based on today the high IQ thing has been brought up continually with him for a long time but now I see it differently. For some reason the genius camp dont seem to want to let it be genius and ASD. And its going to ultimately be my job to decide who I will throw my weight behind and to fight to get him help. But put it this way I do not think high IQ and ASD are mutually exclusive. Quite the opposite. And I dont see how all this can be explained by just high IQ. But there you go. I'm not a genius. So what do I know. I do know I will not let him get messed about.

There seems to be quite a strong belief that many uni profs are on the spectrum... expert in their own field or obsession that they prefer to discuss constantly? Who can really say?

I think you cannot go by what your health visitor says as she is not qualified to diagnose this and should always refer on. She should have been more professional and acknowledged that.

She may, however, have been trying to reassure you or suggest that something more definitive is required in view of the nature of your telephone diagnosis.

What sort of doctor 'diagnosed' this over the telephone? I am actually astounded that any professional would make such an important diagnosis this way without seeing or meeting the patient. You wouldn't diagnose depression or any other illness this way and I'm sure it doesn't comply with ethical obligations.

I actually think that if this was supposed to be a formal diagnosis than it is irresponsible conduct. Parents can flag up alsorts of issues for alsorts of reasons and the doctor has a professional and ethical duty towards the patient who is, in actual fact, the child and not the parent. As a lawyer, I think this sort of practice leaves a medical professional potentially open to malpractice claims.

Perhaps your health visitor was not impressed by this and it influenced her view. She might have only seen your son for a short time but the doctor didn't see him at all.

This doesn't mean you aren't right and won't be proved right but it seems two professionals haven't acted very professionally here!

I'm so sorry you had this experience. You had accepted a diagnosis and now the HV is unsettling you again.

Surely a really experienced HV would have met dozens of kids with a diagnosis who didn't choose to demonstrate their ASD during her visit?

Or perhaps this is part of the NHS/private divide? (which always reminds me of the midwife/doctor divide when you are in labour ie it would be hilarious if you weren't in agony in the middle of it). The NHS is terribly hierarchal and maybe she doesn't accept anyone outside her system?

The IQ thing - did she perhaps want to say lots of positive things? Could she perhaps have been intimidated by your son being such an able boy? To say he would need "something better" than the local pre-school is the sort of bizarre craven remark you would make if you wanted to ingratiate yourself with someone who intimidated you. If a mother said it of her own child we'd all be ROFL wouldn't we?

HV,s, well ive had dealings with a few of them and in the end we refused to have anything to do with any of them, i have found them unhelpful and unprofessional.

We had both our children diagnosed privately by a specialist recommended by the NAS,it wasnt over the phone tho,he did home,school,and days out asessments.

On both occasions i was told that his dx wasnt a "proper" one because he wasnt a "camhs" doctor.

as other people have said HV,s are NOT qualified to diagnose and i would take anything she said with a pinch of salt.

I am surprised by the doctor diagnosing him over the phone though and not meeting him,i thought in order for a diagnosis to be made the psych/doctor had to meet and observe/assess a child, i may be wrong though.

You know your child the best and dont let anyone fob you off.

Did you discuss the milk craving with her? There is lots of anecdotal evidence of ASD children craving either milk or gluten.

I think it's mad to say he couldn't have ASD because he is so highly intelligent. Even those with a limited knowledge of the condition know that children and adults with AS are often very bright. I'm not saying she's wrong but to dismiss it because he's bright is nonsense.

Please don't take this the wrong way but I've been reading your threads these last couple of days and you sound (understandably) so anxious and almost out of your mind with worry. I'm new to all this too as we had DS's AS assessment on Mon. I'm tearful and anxious too but DH has taken the week off and is doing lots of the mundane stuff which is helping. Do you have any support? Anyone who could give you a break even for a a short time so you can catch up on sleep. If I was close I'd pop over but I'm in Cheshire.

I think trusting your instincts re: there being a problem is good, and I also agree that there are times when J (autism, ADHD, v bright academically) can almost pass for eccentric genius rather than autistic, so a good day doesn't rule anything out. I guess, if I were a HV, I'd be a bit wary of a dx over the phone. No, AS and high IQ aren't mutually exclusive, but I can see the problems of a phone dx from someone who has never met the child. I can't see any school/ LEA people accepting it, tbh. Autism can present so subtly in children and needs observation by a specialist who knows what to look for, that's why an interview (ADI/ 3Di/ ASQ, SCQ) is almost always used in conjunction with the ADOS (an actual observation test) - the ADOS + interview are supposed to be the most reliable method.

So while I think the HV is talking out of her arse, I do think you should take the phone dx as more of a reassurance that you're on the right lines and pursue the NHS official dx as an actual gateway to services/ intervention.

I don't agree that the paed will dismiss your concerns either, even if your son is having a good day. IME, they do listen and I do think you're doing the right thing

re the phone dx....

We had a Paed, very experienced and turned out to be exceptionally good at her job. But on our first visit, she didn't even look at DS, just pulled out a very lengthy 'questionnaire' saying that for each time I answered "yes" it would score a point on the spectrum, therefore enough points would equal a DX of ASD. Perhaps your phone DX doctor was just working from this older method???

How rude of me to presume you'd want me to pop round! Sorry!

I just know how stressful these last few days have been and how grateful I am not to be on my own to brood.

I'm sure the Paed will do such a thorough assessment that even on a good day, if he has the difficulties you've posted about, he/she will see it. I hope you get an NHS appointment through soon.

sorry, yes, I didn't agree with this method either but the dx was the same in the end anyway.

TallulahToo - at least if the patient is in front of you, as a doctor, you are beter protected professionally if you make mis-diagnosis - you have at least met them which is a minimum! Lots of doctors are actually rubbish face to face and work according to their own systems and seem to interact very little.

However, for a doctor to purport to make such a diagnosis over the telephone, without a consultation or any other supporting evidence, is, I believe, very unprofessional and potentially worthless.

I also think, having worked in litigation, that private doctors will give you what you pay for.

However, this doesn't detract from the genuine problems you have here. It may just mean you need to actually see a doctor to have this confirmed.