Anyone worry that the dx might be a hindrance?

[asdx2]

Dd has a moderate to severe autism dx although now at seven with lots of input the autism is pretty much unnoticeable to even the most well trained eye.
She has a statement but no academic or social behavioural difficulties and we keep it by playing the game and having very absent ed psychs and LIOs.
Her statement will ensure she goes to the best school and I have no doubt she will do very well.
Every now and then I just wonder though will she be judged on her label before people have a chance to get to know who she is?
At her present school she did a trial week on both sides before they read her statement and tbh it's a good job they did because her statement paints a very different picture to the child in the school.
I will keep her statement because it gives me reassurance that her needs will be met and first choice when it comes to school. I don't doubt that the dx was right at the time and I don't dispute that she still has autism. She hasn't been cured she has just been taught the skills she needs.
I just worry that it may do her a disservice one day.

FWIW I think you must have done an amazing job with her if her autism is taking a back seat.
We have the opposite problem ,in that at 8 Dd3's difficulties are becoming more noticable and she doesn't have a dx. She probably doesn't need a statement and with the right support she will do very well at school. It is accessing the support that is so hard.
I would stick with the statement and dx until she is at secondary, a lot can happen between 7 and 11, that way you will get support in place quickly if she needs it.
Obviously this is my opinion and she sounds fantastic, I hope things continue to go well for her.[hsmile].

I suppose that's true but won't employers approach health? Will university see the statement first and question her application? I don't want her to turn round as an adult and say I limited her choices by getting the dx I did.

It's very much in the back seat tbh. The SENCO asked me well where are her difficulties? after the trial week Autism outreach couldn't pick her out. At the playcentre she plays with a little boy with ASD (the only child he tolerates) as well as everybody else and his parents were gobsmacked that she too has autism.I'm hugely proud of her and want her to have the best chance in life so keep the dx and the statement but worry that later on it may limit her.

Can you share what treatments etc you have done to make such an improvement?

I don't think you need to worry about the statement at all. It's not in your hands. The LEA can withdraw the statement at any time if they feel your child no longer needs it - and I'm guessing at some time in the next 7 years they will notice and do so...

I just did a home based programme using techniques that I had learnt with ds. It wasn't strictly one recognised programme though just the method that worked at the time to get the result. Sometimes it was ABA like (Catherine Maurice was my inspiration) sometimes it had elements of TEACCH, sometimes Intensive Interaction, sometimes Hanen like. I used PECs for a while, Makaton for a longer while. But it was 1 to 1 for around 30 hours per week and started as soon as she regressed at 12 months. For six months she was non responsive and at 24 months she had a developmental age between 6 and 12 months. It was just sheer hard graft tbh not rocket science by any stretch of the imagination.

Wow! And you really can't tell she has Autism anymore? That is an amazing story.

Does she have no difficulties at school at all?

(I'm feeling guilty. Maybe I should be doing more with my DS...)

No not really she has friends, she's top groups, she does everything that her classmates do. She is never withdrawn from the class her TA is a spare pair of hands,her IEPs are inventive . The only possible clue is that she speaks with a BBC newsreader accent when we live centrally. I think that's a leftover from when she only had echolalia and used to have a variety of accents.She is also sensitive to noise and smells but school are aware and manage that.
Ds won't be independent and dd was less able at dx than he was, that was my motivation. I couldn't bear the thought of having two needing care for the rest of my life.

It's a great story, maybe you could write a book [in your spare 5 mins] and we can share some of your methods.[hgrin].
I can only hope that someone teaches me some more strategies for helping Dd3.

Do you know you must be the thirtieth person to tell me to write a book. Teachers, SALTs, paeds and everybody else tells me to as well I might do one day when I get the time

No I won't let the statement lapse at all. School obviously are very supportive and keen to keep her statement because of the extra staff and funding and so we provide contributions to the AR that support the need to maintain a statement. We are fortunate that trying to get any outside input into school is an uphill battle for those that desperately need it anyway so the outside agencies don't fall over themselves to come in and see her in school. SALT maintains a low profile since I challenged the report for the statement and had all her input removed. Ed psych is kept very busy in the school anyway because there is a high ratio of SEN so suspect he just ticks boxes to say that he observed and she was ok. She has a paed review once a year, he knows the score with education and is just happy that she thrives and has a statement when lots don't so wouldn't send any report that might jeopardise that.
LEA know her levels and of course her foundation profile was sent to them. They never questioned her score of 113 or her level 3's .
I actually think it's the LEA's inefficiency that works to our advantage oh and my "don't mess with me" reputation

I don't think it will be a hindrance and it's lovely to hear that she's doing so well!

I s'pose I think of the dx as a safety net, a time of crisis from which we have moved away from (services involved, ds2 doing well, etc) - however, I also think that at times of transition anxiety levels are raised for both parents and our dc's and I guess that's when the dx itself becomes crucial again to access services and get the best help/support, etc ykwim and, without being a doom and gloom merchant, when our dc's are in distress nothing else matters but getting them sorted.

You mentioned in your first post, "judged on her label before people have a chance to get to know who she is?

I wondered who the 'people' were? You don't have to answer that, but sometimes it's worth thinking about!!

From your posts, I think you have widened your dd's choices not limited them - you have been massively proactive and she's doing brilliantly; happy days!x

You may find that when he is older and goes to secondary school that he may need extra support then.

He may qualify for extra time to complete examinations, he may qualify for having a scribe alongside him when he does exam papers.

Lucinda - you don't need a statement to either get extra time or to get a scribe. You get those things if you can prove you need it.

And I'm fairly sure you know that. Most people on this board are very knowledgeable about SN and SEN. Please don't state shit here. We won't put up with it.

asdx2 Fri 29-Oct-10 17:03:13
"I suppose that's true but won't employers approach health?"

Employers will approach health by asking her if she has any health issues relevant to the job. So whether there once was a statement there or not is irrelevant- they don't get to see that; it's what she chooses to tell them that matters.

"Will university see the statement first and question her application?"

Again, the universities will be asking her. Besides, universities these days are usually very anxious to be inclusive and it is far more likely they will bend over backwards to accommodate someone with a dx.

She may have high achieving aspergers syndrome. The dx may not be entirely accurate. IME children on the spectrum frequently have other anxiety type conditions. What the medical guys call co-morbidity. Having a dx will probably help her to apply for extra support if needed. She may get a "passport" to DSA ( disabled students allowance)

She had the right dx at the time she was assessed Even in hindsight she wouldn't be considered to have Aspergers because she didn't have age appropriate speech at three. She only had a little echolalia.
Nowadays she doesn't present as having autism or Aspergers tbh. She has none of the social awkwardness of Aspergers. She has none of the obsessions. She speaks fluently and understands the rules of shared communication. We have no monologues, conversations are balanced and shared, she has no dyspraxia, no stims, she can read facial expressions, she even passes the Sally Anne test.
She is sensitive to loud noises and fruity smells so some underlying sensory issues but they don't inhibit her life.
She has no real anxiety as yet although she isn't impressed by the Halloween masks in Tesco but she's seven and scsry masks are frightening at seven aren't they?

she sounds lovely :)

i have battling my innervoice about getting dd2 dx for a while. at age 2-3 she was v v v quirky, didnt speak at pre0-school, language delay/muddled speech etc. no dx was given as CDC put her differculties down to dh health at the time.

now she is 8yrs old she is still quirky, but unless you look deeper she is almost NT. but change anything and you run into differculties. i had a meeting last week and they said they wer preparing in case she was upset by the xmas activities next half term. i pointed out that xmas activities at this time of your is normal, if they decided NOT to do any xmas stuff, then it would upset her mre iyswim.

preparation, and teaching dd2 that change DOES happen, and has to happen at times, has been our major key. didnt stop this week upset over hama beads though

Your DD sounds fab and it is good to hear her story. I think it can happen that children diagnosed with ASD reach a point in their life when they no longer fufil the ASD criteria (I did read this somewhere but cannot rememember where off the top of my head!) - all be it a tiny tiny percentage of children diagnosed.

I understand what you mean about dx being a hindrance in later years. We never know how our children will feel as teenagers and adults about the route we chose to go down when they were younger to get their diagnosis - especially if they are more able.