Struggling to accept DDs asd diagnosis

[RocketBaba]

Please hear me out and don't presume I'm evilly forcing her to do things or not accepting her for who she is.

Just before 4 dd was diagnosed as hfa, pretty quick at the initial appt. She had a long history of development assessment at the CDC prior to the social comm team. At 2/3 she presented as so autistic in all ways. However she had a massive leap forward in language, now a few quirks but largely age appropriate. She copes better with everything, can be quite social. Handling routine changes, better with noise.

Newer friends would think her diagnosis very odd. To be honest the reason I don't tell people is because of the disbelief, she doesn't present much at all. I wonder if it should have waited ( it's not really getting support anyway, just a list of offers of parenting groups or classses for me). I can accept her easily if she is, but I'm just not sure she is. Frankly she is similar to me as a child, I've grown up and had a good family, job and happiness. I struggle to see the line as to what is just her personality and family habit.

I guess I almost feel silly to say it considering where she is now, a bright little girl, she's so so far from the image people have or really a need for suppory

In theory (practise is harder) you should be able to access support based on need (without a diagnosis) throughout primary and secondary school. At 18 this all stops though - want to access autism support at Uni - need a diagnosis. Want reasonable adjustment made, or protection under the DDA at work - need a diagnosis. I find the 'not wanting a label' mentality truly puzzling.

I knew dd was different as a baby. She wasn't like her contemporaries but nobody else saw it. She was very clever at playschool and 'quirky'.
She went to a Montessori playschool which was small and calm.
At school things began to diverge. She didn't fit into the norm. She became isolated and has no support. The SENCO decided she was gifted. She is.
Finally somebody we met noticed it and we were able to pursue a diagnosis pretty quickly. She has emotional and social support at school but it's more and more obvious there's a yawning gap between her and the other girls.
I'm dreading secondary school.
Turns out that I'm HFA too. Undiagnosed until recently. Secondary school was hell. Dd will have a better experience.

I have autism. I was diagnosed recently at 24 after leaving 6 jobs in succession because I couldn't cope. My parents thought that because I was bright and a good talker nothing was wrong but it is such a relief to FINALLY understand why I don't 'fit'- why I had to teach myself how to laugh, take longer to learn things and struggle with the organisational skills required to hold down a job. Why I am exhausted by tasks that many people do without thinking. At different times of my life I have presented differently (sometimes more, sometimes less symptomatic) depending on circumstance but it is such a relief to be have a tool to explain my difficulties. Many of my friends do not believe me, which is sad, but they have never been inside my head. Although your daughter may present as NT now, the diagnosis may be a vital tool in the future.

Looking back, my friend feels that the reason that he was (and still is) fine at home/when little was that she had unconciously changed the way she parented to accomodate his needs and shield him from things he couldn't cope with. It maybe that you've done the same (which is not a criticism btw but may explain why the autism has "disappeared").

Yes, I would suspect this too. Especially as your DD is not in nursery.

Are you planning to homeschool your DD once she gets to school age OP? Because if not, I think it could be a good idea to try DD at a good nursery school, a couple of mornings a week, just to see how she manages with the busier environment and the greater social demands. Otherwise school could be a hell of a shock - for you and for her.

And insofar as you have doubts as to the diagnosis, her reaction to and ability to cope with nursery will also help you test that out. (Ideally choose a nursery with good SEN credentials so you don't get nursery teachers who say she does/doesn't have it without knowing what they are talking about.)

Thank you. We've been offered some CAMHS group/ early bird/ feeding group and an EP and SALT assessment. I feel silly going to mix with other families we under 5s that are probably dealing with all sorts. After from a lack of sleep we rub along ok.

I understand the when she's older but.... I wish I could pick it back up then. Under 5 feels so full on with meeting people!

To those suggesting autism, I wouldn't personally identify. Simply as I'm not and haven't encountered difficulties really. I am on my own terms but always found my kin easily and I know how to turn on conformity at work! I'm often teased at work about being autistic ironically, but as friends and they love my number abilities....

I don't know where the line is either.

Mini pie.... homeschool I see the most likely start for us, it's an open door

Why don't you just see how it goes OP? You have the diagnosis and can start to use it if and when needed surely? And I don't see why you need to "tell" people unless asked or if needed at school etc. I don't tell people DS is autistic just like i don't tell people DD is neuro-typical. I don't see the need to make a big song and dance out of it. I also don't access support for DS yet bar the SALT and OT stuff which he needs at school. That's because I don't need it and nor does he. If your child is happy and thriving I say don't worry about it.

Rocket ok, that makes sense. If you are considering homeschooling because you think DD wouldn't cope with school, then that does suggest to me she is a bit more severely affected than you are acknowledging? I don't mean that to sound like criticism and of course you may be considering homeschooling for other reasons.

I do understand where you are coming from. I have a 4yo DD who has a completely different (physical) special need. She is outwardly very mildly affected and friends are often very surprised if I tell them. It's very easy for me to forget she has any condition, and tempting to think "but she's so mild it doesn't really count". However I have to remind myself that while she seems hardly affected, she is actually working really hard all the time to do things that other children find easy (and is constantly tired as a result). I have to remember that and make adaptations/allowances for her - and I am expecting reception to be very tough. Not quite your situation but you see the parallels.

I can understand struggling to accept a Dx. Even I did - well do and my DS is now a teen (with learning disability and ASD)- so I should have got used to it by now. But I have that little niggle now and then because he is sociable in a way many of his classmates (all with LD most with ASD) would struggle with. He copes quite well in small groups, if there is a regular pattern to follow. The autistic spectrum is very broad! Being very bright your DD will probably do very well. I found the DX helpful in helping me to understand and help my son- especially when there were difficulties. A more able child might not need so much support, being able to learn fast and with greater strengths to make up for any relative difficulties.- but as others have said there may be times ahead ( such as starting or changing school, adolescent relationships) when the DX may help signpost or inform how best to support. The point of early recognition is to provide support early as needed.
It is up to you who you tell, perhaps just on a need to know basis- and it may be that no one quite needs to know at present.
Reading between the lines I suspect you worry ( as I did) that the specialists have got the DX wrong. Now I know they did not get it wrong for my son - he is severely autistic - time has proved for us that they were right. Its possible - if unlikely- even after all those experts decided to give out HFA diagnosis. You know your child better than anyone. If things are going very well for your DD at the moment - you could just put the thought of ASD on the back burner for the moment - with the awareness that the diagnosis has already given you.

What I found interesting OP is that you don't do nursery, because you feel the fall out would be too much?

So what you are doing is managing the environment for your DD to enable her to be happy and function well. Could that be 'masking' reactions were you to do more 'standard' 4 year old activities?

You may find that when she starts school difficulties start to become more apparent as you cannot control the environment any more, and you will be glad to have the assessment in your back pocket.

(My eldest has dyspraxia which impacts her organisation and now my youngest is at secondary it is becoming obvious to us how much we had to lower expectations for DD1, almost without realising it.)

Can your dd do this, though? Can she "conform" to socialise/interact/learn with her age group -without it being at huge personal cost? If not, well that is the line.

I can turn on conformity and fit in. But it's like I spend the day acting. Social events leave me grumpy and exhausted, or hyper.

I can turn it on too. It's the work and energy it takes and the recovery time that are the issue for me.

OP, I don't think you should feel silly mixing with other families who have different things going on. I think you should make the most of being offered these things and make sure how you feel about it doesn't get in the way of your dd having access to the things being offered. Lots of women get diagnosed so late in life that they don't get any help or support through their childhood so make the most of your dd being diagnosed so early I think!

People who are shocked by the diagnosis either don't know your dd that well or their understanding of autism is very limited.

I wasn't sure about ds1's AS diagnosis.
It has been contested and refuted by his school in a very aggressive and alarming way.
But what can you do? Ask for it to be rescinded?
I would sit tight for a bit.

I haven't read the full thread (sorry)

But I was recently diagnosed with ASD as an adult. I was a very stubborn toddler with some extreme quirks. Blossomed into a bright child. But then at secondary school, everything seemed to fall apart. I was bullied, self harmed, diagnosed with depression, and this carried on into adult life.

I'd have long periods (years even) where everything was settled and I'd seem fine, but add in too much stress and the 'depression and anxiety' would rear its ugly head and I'd lapse back into self harm etc.

So even if your daughter seems fine now, it's a good thing she was diagnosed early because at the first signs of any trouble, you can put relevant support in place for her.

My dds best friend was diagnosed at about age 6. When we met her age 7 her Mum said she was doubting the diagnosis and certainly the girl has done well socially and communication wise, and it has not been noticeable (not many people knew). However, she has struggled with some areas of work from year 5 onwards and needed 1:1 teaching assistant and extra tutoring, this is despite being bright and motivated. She also benefitted from extra help transitioning to secondary school, and has a slightly reduced timetable to allow extra support time. School have also helped her have cooking lessons (selective eating problem). Your dd might not need the diagnosis, but on the other hand it might be useful to her for future EHCPs etc and for making sense of social communication difficulties if she does experience them.

Statiscally- your post about being hyper caught my eye, dd can do that yes, instead of shy.

Thank you for all the responses, really got me thinking!

RocketBaba we home educated our DD through her infant school years whilst obtaining a statement and looking for the right educational provision. It was the best thing we did for her and she is now in a specialist provision that provides an exceptionally calm environment whilst allowing her access to the national curriculum at her own speed of learning. Her home education provided a good base for DD by allowing her to grow and develop through ages 4-8 at her own rate and without much stress or masking.

DD is thriving in her current environment, has made some lovely friends who all live by their own rules too and if we tried to put her into mainstream it would be a disaster. We did the right thing by her although we feel uncomfortable about it still at times.

Keep an open mind and consider everything.

I can go super-talkative and not know when to shut up, just miss the "stop talking" signals entirely. After social stuff especially I can be really hyped up and need to talk through everything that's happened - it's like I need to process it.

Have a look at the book series, The Girl with the Curly Hair. They are sort of a comic book style and cover several age ranges. It really helped my DD to understand herself a bit better and get some more perspective on how to cope with life. She's 13.

I have two children on the spectrum, and a diagnosis helps the cheapest understand and accept him/herself more readily. My ds sees it as a different way of looking at the world, and that's ok with him. My DD is still working on understanding herself, her triggers, her social circle. She has a lovely group of friends that are just as funny and quirky as she is, so I'm pleased for her. My ds makes friends slowly, but seems to have a few acquaintances that enjoy his company, if gis reports from school are anything to go by (lots of girls seem to like him!).

More than anything, a diagnosis helps me be a better parent. Instead of feeling frustrated because they aren't fitting into a particular situation or conforming in the social accepted way, I am able to step back a bit and give them more guidance. It doesn't mean I get it right all the time, but I'm better than I would have been. And I continually work hard at getting better.

I will say that secondary school has not been the scary nightmare I feared, for either of them. DD is in yr 9, and ds is in yr 7. They have both settled in well, seem happy at school, and have found their niches; DD is into art and ds is a huge fan of drama! He's joined the drama club and is very devoted to their productions. I really am proud of them.

Being diagnosed for me was so valuable later in school and now as it helped me understand why I do why I feel like I do and the support that can come with a diagnosis.
If your thinking of home schooling and can't go to nursery because your worried about the meltdowns and reactions, if your thinking of home schooling surely that says she does present but you manage it with controlled environment etc. Think most autistic people will tell you the same, life is far more stressful in the unknown places then at home and places you know.

Being diagnosed hasn't stopped her being your bright little girl, it's not a negative, it will just enable her to access the support she needs and understand why when she's older

My DS was diagnosed last week he is 16, I spent years making a decision. He is acedemically gifted, well behaved but anxious.

The diagnosis took 1.5 hrs which was a shock, thought it would be more complicated.

I was diagnosed at 17, a social worker helped me with it after a suicide attempt. I told my parents and they said they'd known since I was 5, but didn't think I was because of how smart I was. That hurt. School was hell for me, and I've got PDA traits too, which was treated as willful naughtiness my entire childhood. I'm only 21 and already very low contact with my mother as she absolutely refuses to acknowledge it. I understand how hard it must have been for them to wrap their heads around but I hate them for not telling me, or helping me in anyway. I struggled so much socially, I have very few friends and I'm still tripping over myself to mask properly. The dx isn't for you, it's for her. I understand myself now. I never knew why I was different before.

That's awful kraken, I'm sorry to hear it's still not acknowledged.

Please don't worry about my dd. She is adored, I may wonder in my head or talk on here but I accept and adapt for her to make her happy. I have no embarrassment if she doesn't conform and I stick up for her even I don't understand why she does it, I know whatev r the reason she needs support and love dealing with things.