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How does a diagnosis change things

(14 Posts)
lisaloeb Wed 10-Apr-13 22:21:57

A little bit of a background we've suspected DD1who is now nearly 13 has been dyspraxic and have ASD for a number of years but as her behaviour has been stable for a number of years and her friendships have remained stable I've never pushed for a diagnosis.

Her behaviour has become a little erratic and yesterday a friend, ironically enough has similar sen, called her a local term for retard.

A half hour call to the SENCO has led to her helping me push for a formal diagnosis.

My question is will it bring any benefits?

StarlightMcKenzie Wed 10-Apr-13 22:39:52

Not unless you know what it is you want or think she needs, and then getting a formal diagnosis can help you to fight for those things and also offer 'some' protection under the disability discrimination act.

MurkyMinotaur Fri 12-Apr-13 09:23:14

I have Aspergers and was diagnosed in my early 20s because no one realised when I was younger. Without a diagnosis to understand why I was different, I believed I was inept and I suffered from depression and anxiety disorders, from age 14 to the current day.

I wish someone had allowed me to learn about Aspergers and in doing so had allowed me to understand myself. I envy people who are diagnosed young. Since having a diagnosis, I can accept and like who I am. That's not a service I had access to, but an internal peace...at last.

Ineedmorepatience Fri 12-Apr-13 09:31:17

Hi murky and welcome to the board, thankyou so much for sharing your story with us. I had a really tough time fighting for a diagnosis for Dd3 but it was for exactly the reasons you mentioned. I hope your diagnosis helps you as it is helping my Dd3.

Good luck smile

whokilleddannylatimer Fri 12-Apr-13 09:35:53

Message withdrawn at poster's request.

PolterGooseLaidAChocolateEgg Fri 12-Apr-13 10:53:10

Message withdrawn at poster's request.

SallyBear Fri 12-Apr-13 11:54:46

I think that MurkyMinotaur nailed it with exactly why you should get a dx. It's having that understanding of why your DD does and feels things that others may not understand or appreciate.

MurkyMinotaur Fri 12-Apr-13 13:32:00

Ooh...while I'm here...Have you heard of a book called 'Aspergirls' by Rudy Simone? It's not a perfect book, but it's a very helpful contribution to understanding what it's like to be an older girl or woman with Aspergers, including chapters on gender identity, school, puberty, sex and relationships, employment, having children etc.

Justgotdiagnosis Fri 12-Apr-13 22:40:06

Thank you for this.
I'm struggling with knowing if diagnosis was the right thing for my DS
As my name suggests, we have got one know, so Murky, your post helps to reassure me this will help him in the future

MurkyMinotaur Sat 13-Apr-13 01:25:24

I'm not sure whether this is obvious and patronising or useful... But as an adult, I feel empowered by my diagnosis because it belongs to me and I can choose how and when to use it wisely. For example, if tomorrow I chose never to mention it again, I could, pretty much. Or I can continue to tell certain people e.g. employers and friends. AS limits me, but I don't feel limited by having the diagnosis itself - rather I feel I own the diagnosis. I hope your DC feel empowered in that way. It's pretty cool.

flowwithit Sat 13-Apr-13 10:29:15

My ds was diagnosed at age 11 and I can't say we got the help I hoped for but that's down to the school not being very supportive. We are still trying for more support and won't give up though because he doesn't want to move schools and I dont think he would cope with moving either. I do think a diagnosis is good because it helps with understanding and my ds was relieved to know there was a reason for his struggles. He says he wishes he didnt have AS but I am hoping to help him be more positive and confident in the future. I talk openly about AS, the spectrum and autism charities etc so its not a taboo word and to help him accept himself more. I think the diagnosis is confusing though with ASD, ASC, AS, HFA and we have had differing opinions so I think that needs to be clearer generally.

Ineedmorepatience Sat 13-Apr-13 10:58:15

Hi again murky my Dd3 who is 10 would I think understand what you are saying. She has recently had some input at school to help her understand her diagnosis better and we talk about it alot at home. I think she feels comfortable with who she is and that includes her Asd. I hope she continues to grow in confidence. Thanks again for sharing your thoughts.

harrietspy Sat 13-Apr-13 12:57:27

Hello. My ds2 was diagnosed with aspergers a few weeks ago. He's 7. His class teacher and senco were already working with him to reduce anxiety etc so I don't think the dx will make much a difference at school right now because they're already doing a lot. But the dx helps me to understand some of his behaviour and be more patient! I think the dx may help when he moves class or school. It also helps me to have more confidence in my own ways of dealing with his difficulties and ignoring the disapproval of others who think I'm being an indulgent parent! Every situation is different, I know, but as a parent, I've found the dx to be nothing but helpful. All the best to you and your family.

lisaloeb Sat 13-Apr-13 23:06:10

Thank you Murky and all the others that have answered. The SENCO has advised me of Aspergers and to be fair we've rather accepted that and possible dyspraxia since she was 3.

She is an anxious child and can be withdrawn and not understand social cues for example she has shunned me today for refusing to go to the shop and buy ice cream when we have some in the freezer. Because it will be in a bowl rather than the cone she wants its led to her freezing me out until she wanted something else. I am seen by her friends parents as allowing her to be indulgent and spoilt. She has a mobile phone contract paid for by the small amount of dla she gets, simply because of she feels anxious she can call or text me anytime, a friends parent called me spoilt because she has one and boasted she had the latest blackberry. FFS I would rather have a child without disability and a £10 PAYG phone than her having a blackberry so she can ring anytime.

I will look at the book luckily shes not hit puberty yet, helps with the behaviour as she is seen as younger than she is.

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