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To diagnose or not...

(36 Posts)
Missisdoyle Tue 12-Apr-16 10:51:08

We have had 2 appointments with Paed' & 1 with SALT in the run up to July's possible diagnosis for ASD, for my HF DS (5). Paed said in Feb that she was leaning towards a diagnosis of ASD. Our school SENCO, ED Psyc, SALT & Paed have all told me that my DS ( who is already getting 5 hours/week TA time) will not get any extra help at school & not from NHS SALT. I have been watching various programmes this week on BBC, about people with ASD trying to apply for 100s of jobs & not even getting a reply. It was quite an eye opener, as I had thought that now we have things like positive discrimination to help people with special needs get a fair chance. Now I am wondering will this diagnosis be more of a hinderance than a help to my intelligent & creative son. I also realise that it could be misleading & confusing if my son gets a job & then has to explain himself to his employer later on... Don't know what to now. Advice would be gratefully received.

AntiquityReRises Tue 12-Apr-16 11:14:58

Always get a diagnosis. Not getting one means he will still have the same issues but, for instance when older and working, no protection under the Equality Act. Having a diagnosis means that as he grows he knows himself and knows why he finds things more difficult etc. and where to look for information to help himself.

All the people who've said he won't get extra help can only know how things stand right now in the place you are living in. Services are being cut. My ds is only a priority during a restructuring because he has a diagnosis. If cuts continue I foresee a diagnosis being even more of a necessity to get help.

AttilaTheMeerkat Tue 12-Apr-16 12:19:19

"Our school SENCO, ED Psyc, SALT & Paed have all told me that my DS ( who is already getting 5 hours/week TA time) will not get any extra help at school & not from NHS SALT"

Hmmm, why have they told you this?. Also 5 hours a week is 1 hour a day; its certainly not anywhere near the full school day and it is likely not to be sufficient either. Is it basically to put you off seeking extra help for him in school because it certainly seems like it, people like the SENCO and Ed Pysch are under pressure themselves from their employers the LEA.

Do not listen to such naysayers; they also do not have to deal with the long term consequences of their words and inactions. I would read IPSEA's website www.ipsea.org.uk and apply for an EHCP for him asap.

See a diagnosis purely as a signpost to getting him more help. I would always seek a diagnosis.

zzzzz Tue 12-Apr-16 12:32:44

I'm nort sure why you thought there was "positive discrimination" to ensure jobs for people with additional needs. I don't think that's ever been the case. There are very few jobs where your child would have to disclose his diagnosis if he didn't want to (things like fighter pilot etc) otherwise he can choose to disclose and gain the benefit of legislation to protect him or not and be treated like everyone else.

If you refuse dx now it could take you years to even get a chance of getting it again and older children are harder to dx.

mummytime Tue 12-Apr-16 13:10:31

My DD has a diagnosis - she gets very little extra help now in school - she doesn't need it.

Do I regret getting her diagnosis? NO. It is of great use to her. It is there if she ever has an off day (she may be told off but there is understanding as to where the behaviour comes from and how to prevent it in future). Her teachers are fore warned via the computer system, and know that somethings are harder for her. She herself knows she is different, which helps when other people are being inexplicable. I have had my attitudes changed; I no longer expect/hope for conformation, and just take her for who she is (whether that is floods of tears when boarding a plane or whatever). And everyone has been prepared for times when things could get "trickier" (changing schools, teenage homones etc.).

If she has behaviours that limited her employment prospects in the future, then hopefully a diagnosis which actually help either employers to make adaptations or to guide careers advice from totally unsuitable choices.
Discrimination may be a problem, but its likely to happen with or without a diagnosis.

Missisdoyle Tue 12-Apr-16 18:57:20

Thanks, that is beneficial. May I ask what happens after diagnosis ? What should I expect to ask/to push for regarding school etc ?

zzzzz Tue 12-Apr-16 19:10:29

Nothing "happens" as such. Medical diagnosis is really nothing to do with school etc. In fact you don't HAVE to tell them at all (though it would be unusual not to).

I suppose the diagnosis will give school access to expertise from the CIT and you could use it as part of your evidence if you were applying for EHCP. You can use it as part of your evidence for DLA and as part of the evidence for needing say specialist dentistry or perhaps special accommodations in exams or at hospitals (eg it helped explain why ds needed to be top of the list and I needed to be in recovery for a minor procedure under GA). In some areas there are parenting courses you can go on.

mummytime Tue 12-Apr-16 19:31:40

The key thing for me is that my DD couldn't be labeled "a manipulative violent child", teachers had to at least seem as if they were understanding she had a disability (but have been known to blame her for something they caused, they didn't get it at all really - which is frightening considering how many ASD children that school had taught).
On the other hand it helped me ask questions of secondary schools, it also helped them suggest issues she could struggle with (they know their school day better than a visitor) and with an excellent SENCO worked to prevent problems. It also did get her invited to extra induction and some social groups, which did help.

The diagnosis is something you can use, it can help you look for strategies, and most valuably is a reason why "they don't act normal" in any given situation.

Most stuff you should be able to get without a diagnosis, as it's supposed to be needs based. And you can access the NAS etc without it. But in my experience it helps.

Missisdoyle Tue 12-Apr-16 21:06:56

Thank you, I thought that legally you had to state that you had autism on a CV/job application form. It's good to know that it is a choice. I think that because my son is mostly a model pupil,( a stickler for rules !), that the SENCO had suggested he didn't need any extra hours/EHCP.

PolterGoose Tue 12-Apr-16 21:31:51

Message withdrawn at poster's request.

Missisdoyle Tue 12-Apr-16 23:32:32

I am new to this. I want to do what is best for my son. All through this process, which began Nov 2014 ,I have had discussions with ED Psyc & Paed about what they termed "labelling" & how they deemed it to be "unhelpful". The Paed warned me last time, "a diagnosis is for life - think very carefully", which has festered. I am "dithering" because I am hearing conflicting messages from every angle. I am not a professional, just a stay at home mum & I do take what these people say very seriously. Most of the health professional I have spoke with have suggested that because DS is HFA, then a diagnosis "may not" be best for him. I agree that autism is not an option & I said to the Paed last time that if he had asthma/diabetes, she wouldn't be reluctant about diagnosing him. I know that DS is neuro diverse & have no qualms with that. It's just so fucking confusing...

Missisdoyle Tue 12-Apr-16 23:35:30

Thanks to all of you, I really appreciate all of your suggestions & comments in my abject confusion. It's always a comfort & support to have the advise of those who have experience.

Missisdoyle Tue 12-Apr-16 23:39:14

... I also asked the SALT about Auditory processing disorder & she said it wasn't a real condition !! I told her that I suspected that DS had it & did she know anything about AIT & she didn't know what that was either....

zzzzz Wed 13-Apr-16 00:08:53

Are you uk based? confused

Are these NHS professionals? shock

mummytime Wed 13-Apr-16 10:39:35

You are not just a stay at home mum.

Your child has a neurological difference - you need to be his prize fighting advocate.

Does the paediatrician have a child with ASD? Have they seen teenagers or adults with undiagnosed ASD? (Or do they even have much contact with those with a diagnosis?)

Labelling with ASD is in my opinion/experience much much less harmful than being labelled with something else such as: bully, violent, sullen (selectively mute), or even a label of depression that could have been avoided.

School might be fine now, but a change of school or staff or just maturing a bit slower than classmates can change all that.

mummytime Wed 13-Apr-16 10:40:18

You are not just a stay at home mum.

Your child has a neurological difference - you need to be his prize fighting advocate.

Does the paediatrician have a child with ASD? Have they seen teenagers or adults with undiagnosed ASD? (Or do they even have much contact with those with a diagnosis?)

Labelling with ASD is in my opinion/experience much much less harmful than being labelled with something else such as: bully, violent, sullen (selectively mute), or even a label of depression that could have been avoided.

School might be fine now, but a change of school or staff or just maturing a bit slower than classmates can change all that.

AttilaTheMeerkat Wed 13-Apr-16 10:44:37

"Most of the health professional I have spoke with have suggested that because DS is HFA, then a diagnosis "may not" be best for him".

Why is my response to that question?. This is simply unprofessional on their part. I was also going to ask if these people work for the NHS or CAMHS.

In 10 years time none of these people will be at all involved with him but you will still be there and picking up the pieces made from their indecision and dithering. I see a "label" purely as a signpost to getting him more help. These people are working in a system that is overloaded; they do not want the extra work involved in helping your son.

zzzzz Wed 13-Apr-16 12:02:15

Either you fit the criteria or you don't. If you do you ARE autistic regardless of if you stay in the closet or not.

I think it would be incredibly damaging to have your parents try to hide your disability.

Missisdoyle Wed 13-Apr-16 14:46:40

I am in UK.

zzzzz Wed 13-Apr-16 14:58:27

Well then push for diagnosis, refuse to let them share information and if you get it put it in your back pocket till you have worked out what is best for your Dc?

Missisdoyle Wed 13-Apr-16 21:07:26

Zzzzz - what do you mean by "refuse to let them share information" ? I thought the health prof's shared it by nature of their jobs ( diagnosis is a result of shared info about the DC).
I spoke to his TA today & she also advised diagnosis ( she knows DS pretty well by now). So I will keep going with the diagnosis route.
I wouldn't hide my son's neuro diversity, I am incredibly proud of him. I have, as Ive said previously, been( poorly) advised not to "label" him by the health professionals around him & this has resulted in my confusion.

zzzzz Wed 13-Apr-16 21:18:30

There are (very) strict rules about sharing medical information. If you do not give permission for your paediatrician to share your sons diagnosis with school (or anyone else) he can't and won't. It's no different than if you went to a Dr about something.

Missisdoyle Wed 13-Apr-16 21:23:18

Aaah, I understand now... No one had mentioned that before to me. I can see that I have a lot to learn ! Many thanks for your help, I don't know any parents of ASD kids, so this is both enlightening & supportive.

zzzzz Wed 13-Apr-16 21:30:07

Stick around, we operate a kind of hive mind and muddle along. No one in the real world seems to tell you anything.

PolterGoose Wed 13-Apr-16 21:33:28

Message withdrawn at poster's request.

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