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Pressured into a diagnosis, help!

(24 Posts)
finnian2004 Mon 12-Nov-12 13:42:25

Hello, My son is 8 years old. His school have been pushing for me to get an Autism diagnosis for him for the last year and has been referred to a specialist unit for an assessment. I have gone along with this. He is slightly behind with reading and writing and finds some situations socially difficult....but the school say he is improving dramatically every week....so why are they pushing so hard for this diagnosis?? My gut feeling is that he is NOT autistic. The school describe a completely different child to the one I see at home. At home he is a perfectly normal happy attentive boy. I am not in denial, if I thought there were something wrong I would be the first to insist on help. The school say I dont see his issues because i have unknowingly adapted to his problems.....they are making me feel like i don't know my own child. Its extremely upsetting but i just dont agree with them. Our assessment appointment is at a hospital tomorrow. Help!

finnian2004 Mon 12-Nov-12 13:43:38

Do I have the right to disagree with his school? They make me feel like i can't. I feel powerless

finnian2004 Mon 12-Nov-12 13:48:55

All of our friends and family that see him alot.....also can't see anything wrong with him....why are the school doing this?? My son even says that he feels no different to anybody else. Why can't they accept him for who he is?? why should he need a 'diagnosis' to get help with reading?? I realise that I may be offending alot of people with this, I don't mean to, just at my wits end.

finnian2004 Mon 12-Nov-12 13:58:30

Should he be diagnosed with autism (even if he doesnt have it) if it makes his life easier at school??? please awnser somebody.....

HairyMaclary Mon 12-Nov-12 14:17:58

My child doesn't has ASD so I don't have personal experience of this, but my understanding from on here is that is is highly unlikely hat you will walk away from your appointment tomorrow with a decision one way or another. The assessment for a diagnosis of ASD seems long and to involve multiple professionals. I suspect if they drs think it is appropriate tomorrow you may start down that path. No diagnosis will be made without extensive consultation with you and you can refuse it.

What I will say is that it is very easy to adapt your own behaviour and home environment to make life easy for your child without really realising it, especially if they are an only DC. School may be right about that, although obviously I have no idea. It doesn't mean you don't know your child, it means you know them very well and have adapted to them, the school can't adapt in the same way and your DC may be finding the two different environments challenging.

Anyway I hope someone with first hand experience comes along and this bumps it for you. Good luck.

DrWhoBrain Mon 12-Nov-12 14:18:03

Hi sometime it can be hard to see what others see when you spend so much time with your child, as far as im aware a child will not get an autism diagnosis unless they are autistic and even if your convinced your child is you have to jump through hoops to get that diagnosis. Have the school told you what behaviours are making them think autism? please give some time for people to answer im sure some people with experaince will be along soon

Ihavenobum Mon 12-Nov-12 14:18:53

Your choice..your Ds.

Has he had his eyes/hearing checked?, does he have an IEP in place?, has he been observed by an EP (which will be funded by the school BTW)?

We are pretty much the same as you;

Ds different at home than school, he was 5 when I was informed that he had autistic tendencies by an educational psychologist who I didn't even know was coming in to observe him but apparently the school were so concerned that they had him observed anyways. I kind of fobbed them off after taking a quick look at a website about autism (which may I say I didn't know anything about back then), then a few months later a teacher from ds's school actually approached me and told me to take him to the Gp she had seen "this" before and he needed more help!?! OK this really panicked me sooo I went online again, this time I came across aspergers...and casting my mind back to the times when I had watched ds do something or talk about something (and a few other things) and back then I just thought ok thats a little strange but then carried on and just accepted that that was my Ds after all everyone is different.

So I discussed it with Dh who basically told me I was reading too much into what I had previously been told and so I just carried on as I was then Ds's headteacher got in touch with me asking for permission to get ds assessed for aspergers which I agreed to because a can of worms had been opened and I needed to put the lid back on! we are currently in the process of an assessment for ASD but since I have read so many things which can cause similar characteristics as aspergers/ASD ie. learning style, IQ, proccessing difficulties(hearing/eyesight), upbringing, the list is endless.

Now the school are making it look like it was all me..I went in there and declared my Ds has aspergers!! I really wish I had not paid any attention to what the school had said and carried on at the end of the day they have ways of supporting our Dc using an IEP or outside agencies. Why, when the difficulties lie at school should us as parents be the ones to label our children especially when we had no concerns to begin with?

Walter4 Mon 12-Nov-12 14:21:34

You're son should definitely not be diagnosed as autistic if he is not. However I don't think this will happen, as many on this board will tell you, it's hard enough to get a diagnosis when you're child is asd let alone if they are not!

If it were me I would feel like you do, if you take him along and they say he is absolutely fine, then I'm sure that will make you feel quite good! School teachers have no qualifications to diagnose asd at all, he may just need a little more help , which they should be giving him regardless.

finnian2004 Mon 12-Nov-12 14:28:27

Thankyou so much everyone. Finnian is a year behind with reading and writing. He finds playtimes difficult as he is quite the drama queen smile He has little conspiracy theories about his friends but they dont upset him. The school have said that even if a diagnosis happens....they will NOT offer him any more support...as they say they do enough already....so WHY do they want me to do this? we have meetings at the school once a month. He has has several reports done by people, a speech therapist says he seems fine and that interaction verbally is not a problem for him. His teacher says he has to check the calender everyday, is unorganised, and can only concentrate for short periods of time. I said 'well shouldnt he see the education psychologist?' they said no, as it would 'waste his time' So many mixed messages my head is spinning. My son has no problems socially outside of school. Could it be that i should teach him at home and that some kids just dont suit the education system as it is?

finnian2004 Mon 12-Nov-12 14:30:13

Walter....they say they cannot help him without recommendations from professionals. I have just called the assessment team ahead of our appointment tomorrow....they say they are very unbiased and do not involve the school at all. So we shall see what they say! smile

finnian2004 Mon 12-Nov-12 14:32:36

I feel so sorry for people who are fighting for the opposite conclusion. the system is all wrong in my opinion sad

Ihavenobum Mon 12-Nov-12 14:37:23

Contact your Ds's LA Educational Psycholgy Department, Discuss all that has been said to you say that you are concerned that you Ds's school are expecting you to get your Ds a dx but you don't see any difficulties at home and see what they have to say.

finnian2004 Mon 12-Nov-12 14:38:44

Thankyou, I will do that now smile xxx p.s...I also have no bum!!!!

zzzzz Mon 12-Nov-12 15:22:40

Your school are nothing to do with your child's medical care. They have a duty (as do we all) to report neglect/abuse, but beyond that it is nothing to do with them.

Go and see your GP and get him to get them to behave themselves.

On the subject of possible diagnosis of possible neurological difference, the team you are dealing with should be able to put your mind at rest. They cannot share information between professionals without your written permission. You can refuse diagnosis if you like, but ask them to clarify this before you start.

On the whole I find NHS far more "adult" and sensible than teaching staff and so easier to deal with.

It is highly unlikely you will be presented wit anything like a dx till you have seen multiple professionals over months or years, if at all.

StarlightMcKenzie Mon 12-Nov-12 15:36:26

Even if you got a dx, you wouldn't have to declare it to ANYONE. You can simply say that you have sought medical opinion and are happy with what you have been told, end of.

coff33pot Mon 12-Nov-12 17:55:09

I dont think schools can win by either disclosing concerns or keeping it to themselves. Somewhere or other they are going to upset a parent. One who feels there is nothing wrong at all or one that wished to god that someone spoke up sooner when their children were younger.

There is nothing to lose by going and everything to gain. You wont just get a dx for the fun of it. No one will dx autism just to gain help for your ds it is harder than you think to get a dx.

But what you will get is peace of mind smile These proffesionals will decide if your ds needs further indepth assessment. If he doesnt then you can safely say to the school it is not autism but he needs support with his reading and writing only. If he needs further assessment then it would be a good thing the school informed you of their concerns and your son is going to be assessed for support.

Should you end up with a dx it is up to you whom you disclose it to. It is not necessary to inform anyone, only if you feel he will gain more support by telling them. You can refuse a dx also but bear in mind should one be offered it may be useful to keep on the back burner for senior school where demands and peer pressure are higher.

Good luck x

MrsCantSayAnything Mon 12-Nov-12 18:28:04

Finnian this happened to me when my DD moved lat year to her new school...she's 8 now and in year 4 bt then...she was just turned 7 in a high achieving year three...the new girl..and shy to boot.

Within a term, her (very young) teacher had me in there with suggestions that DD was on the spectrum,

I knew an know still, that she is not. She's bright and shy and was very new so was struggling with the social side of things...she was also two levels behind!

I refused an assessment and the HT supported me.

The teacher was still wanting it at this point.

A year later, the child who wouldn't join in, has been begging for a lead in the play and has a nice group of friends AND has move up three levels.

I had her join Brownies and made sure she had lots of playdates...I also made sure she knew that her quirkiness was a GOOD part of her.

She's like me...a bit odd in some ways but not on the spectrum. If I thought she was then I would be asking for her to be diagnosed. As it is, I have saved time and money and STRESS by refusing.

Can I suggest that in a year when your DS is more mature he will be ok. Can you observe him in the playground without him knowing? I did this so I could see what the teacher was worried about and what I saw was DD was too shy to join in.

justaboutchilledout Mon 12-Nov-12 18:34:34

Message withdrawn at poster's request.

MadameSin Mon 12-Nov-12 18:45:20

Finn no paediatrician is going to diagnose a child with autism if they do not have it regardless of what his school says. As you have read here, it can be very hard to get a diagnosis when you desparately feel it is warranted. My son's ADHa is 100 times worse at school ... at home he just has boundless energy and talks the legs off a donkey

MrsCantSayAnything Mon 12-Nov-12 18:45:43

My DD would in no way have co operated either. Her teacher attempted to "prove" something to me by asking DD about some illustrations of different people doing their jobs...a policeman and a nurse etc.

She would say "What is this a picture of?" and my stubborn DD who KNEW she was being "tested" would say "Just a normal man"

hmm

She knew it was a policeman or whatever but was being perverse! She'd do that to an assessor too.

OP...imo you know best....go with your gut.

MummytoMog Mon 12-Nov-12 18:51:25

I just refused to have DD assessed - we've been stressed out so much since the SALT suggested ASD that the thought of more testing right now, more hoops to jump through and more arguments with OH about it just about finished me off. The EP has seen her and said he is happy to watch this space (and has two daughters on the spectrum) and OH and I have decided to see how she is in six months. And I'm happy with that decision but STILL second guessing myself. So I imagine you're feeling particularly stressed out right now. If teachers/SALT are still concerned in six months, we will have DD assessed to set minds at rest or to get her any extra help she needs if she is on the spectrum. I don't think she is. I've never had the slightest concern about her until the SALT mentioned it, and it's been months of worry, watching her like a hawk and thinking that everything is a symptom and not enjoying my child. So I think it might be bette for your peace of mind to have DS assessed, but I completely understand why you might not.

lingle Mon 12-Nov-12 21:56:15

we declined further assessment four years ago.

Keep asking the question "for what purpose are we doing this? What would change for the better if he had a dx?" We kept asking this and it helped us decide.

You don't have to agree with the school about what label to use, but to get them onside you do need to read the observations they have made - horrible though it is to read descriptions of a child you don't know with your child's name sad- and think about how you can work with them to figure out what the problem is.

best of luck

mrslaughan Tue 13-Nov-12 09:30:13

I second that there are things that can make a child "look" like they have ASD, when in fact it is something else. DS has very poor working memory, fine motor dyspraxia, and sensory processing disorder. In some situations (highly stimulating) with us he will seem different (or just plain naughty) but most of the time he just seems really normal - at school however he apparently looks like he is definately ASD. We choose (privately) to do a multi-disciplinary assessment just under a year ago and got DS diagnosis but senco still bangs on about ASD - which I have to say drives me crazy. There seems to be huge awareness of ASD and not a lot of other learning difficulties.
This is not to say DS does not have ASD, as one team disagreed with diagnosis so it was recommended we after 6 months go back and do a specialist social communication assessment. I don't think we will be doing that yet, as due to change in circumstances we can't afford to do that privately, and secondly when I asked point blank what would we be doing differently (therapy wise) they said nothing..... It gets to the point that you just need to handle/ help with the behaviour and difficulties and stop worrying about what it's called

Ihavenobum Thu 15-Nov-12 12:41:16

Hello Finn just wondering how you went on?

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