Still not believed even with diagnosis

[mac4]

Hello,

 

Feeling deflated and stressed and it's only two weeks back to school, daughter recently went to physio, told she has hypermobility of joints in hips,knees, wrist, fingers have now been sent to OT for urgent referral for assessment for aids for handwriting. So yet more to add to the list

 

Went to school for mid term parents evening deputy head has never fully believed diagnosis. She kept telling us how wonderfully verbal she was and how she was such a nice girl, i felt like shouting I didn't realise to have aspergers you had to be mean and mute.

 

Just because she is passive and non disruptive, yet still has lots of difficulties. Fed up trying to educate people, even with a diagnosis it doesn't mean they believe it.

[Karen A]

Hello,

 

Feeling deflated and stressed and it's only two weeks back to school, daughter recently went to physio, told she has hypermobility of joints in hips,knees, wrist, fingers have now been sent to OT for urgent referral for assessment for aids for handwriting. So yet more to add to the list

 

Went to school for mid term parents evening deputy head has never fully believed diagnosis. She kept telling us how wonderfully verbal she was and how she was such a nice girl, i felt like shouting I didn't realise to have aspergers you had to be mean and mute.

 

Just because she is passive and non disruptive, yet still has lots of difficulties. Fed up trying to educate people, even with a diagnosis it doesn't mean they believe it.

 

I know how frustating it is.Ben is not passive and can be disruptive.However he is bright and talks like a very articulate adult.He is 10.The HT has never really understood how he could have AS.Karen.

 

[Kathryn]

<'>

 

Sounds familiar - it's depressing that AS awareness has not moved on very much since our similar struggles 5 years ago.

 

K x

[bikemad]

Know what you mean its a pain having to constantly explain to people who think your child is fine cos they aint a mute grgh.... <'>

 

My lad has hypermobility of his joints and it took forever for me to get the school to let him use a different pen n aids on pencils etc...... <'>

[cmuir]

Hi

 

Know how you feel. Those that doubt the diagnosis are usually people who have no knowledge of ASDs or are ignorant or inexperienced. Sadly that ignorance, etc is not just applicable to, for example, family members, neighbours, friends, etc, but also professional people. You could contact NAS and get some literature and give it to the individual/s concerned in the hope that it gives them food for thought. Where the HT is concerned, she is not qualified to give a professional opinion on a healthcare issue such as querying a diagnosis (doesn't stop them having a personal opinion!). Might be worth providing a photocopy of a relevant report from healthcare professional along with a covering letters and NAS leaflets as well stating that you appreciate how positive attitude, but it's imperative that her difficulties (subtle or otherwise) are fully recognised in order that your child gets the help needed. Sadly, some HTs play political games, for example, for league tables, they want to be seen to be managing well. It's incredibly difficult, but my guess is (this happened in my son's case), that the older the child becomes, the more obvious their difficulties will be. My son is certainly very much aware that he's different and his peers are becoming aware that R is different (sad, given that he's 7). In addition, a lot more will be expected of them academically and on a social level too. Time will tell.

 

Best wishes.

 

Caroline.

[mac4]

Thanks for your replies. This site really leaves you feeling less like the lone ranger and part of a cool support network

[florrie]

I so relate to this.

 

I've got 4 seperate diagnosis by world class experts,using different established diagnostic procedures, DSM 1V and ADOS and it is still not accepted by NHS who can't even get to grips with basics of what the diagnosistic criteria is.

 

Have you thought about complaining. I think it is the only way but so difficult

[DazedandConfused]

Went to school for mid term parents evening deputy head has never fully believed diagnosis. She kept telling us how wonderfully verbal she was and how she was such a nice girl, i felt like shouting I didn't realise to have aspergers you had to be mean and mute.

 

No surprise to hear this. A lot of parents with Aspergic kids seem to spend their time at the school banging their head against the wall (my son inherited it from me). Whenever you talk to people and the word Autistic enters the conversation, even when followed by spectrum, they seem to think Rain Man. I'm 44 now but when I started secondary school I was all keen to make friends, new break and all that. I was OK talking to adults as they tended to be direct about things. I'd also been bought up to a strict set of rules about politeness so I was seen as well behaved. Trying to fit in with other kids didn't work though and the harder I tried, the more of a mess I made leading to derision and bullying. By the time I was half way through the 2nd year I just closed up entirely. When I entered secondary school I was in the top sets for most subjects. By the end of the second year I'd sunk to the bottom in all of them as part of a grand plan to become invisible. Your not a swot so you don't stand out and you do the minimum of work required you keep the teachers off your back.

 

What with all the info on Asperger's that's available today there really is no excuse for ignorance anymore. It may be worth visiting the school's website and seeing if they have a staff list that details who is responsible for special needs and see if you can get to them and explain the situation. If you have a diagnosis, print copies and hand them to the school "for their information", or alternatively post them recorded delivery so you have evidence it was delivered. If new things come to light that are relevant, send them in as well. Most important though is don't take no for an answer and try to stick with the same staff member so you're dealing with someone who knows the history.

 

Good luck with it. Hope it all goes well.

 

J

[puffin]

I think that many in education do not realise about the scale and range of those on the autistic spectrum - there seems to be a tendency for some to think that all with AS/ASD are exactly the same and then appear puzzled if the child is not identical to previous children they have come accross with AS/ASD

 

Also I think that many school staff base their entire knowledge on boys with ASD and don't even seems to realise that girls often present in a totally different way compared with boys.