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Struggling to accept DDs asd diagnosis

(53 Posts)
RocketBaba Thu 15-Dec-16 09:46:52

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

Clankboing Thu 15-Dec-16 09:59:39

Just try not to stress about it. My ds had times of normality (for want of a better word) but by God, I was glad of his diagnosis when he entered high school. The change made him very noticeably different. In fact, if I watch videos of when he was about 5 he seems less asd ish than he does now. Fortunstely he changed school and went to a mainstream high with asd unit. You daughter: She has got the diagnosis now. She is your child still. She hasn't changed. She is everything now that she was before. Tbh it doesn't matter if characteristics are personality or asd. It is so difficult to entangle. Don't try :-) Teach her things that she needs to learn as you would any other child. If she finds it difficult to talk with friends, help her. If she reacts to sensory stimuli, look up how to cope. The asd makes some things more difficult for her, but look for resolutions. You are having a good patch - enjoy it. Xx

Putsomepeasonit Thu 15-Dec-16 10:01:41

You can have autism and still be a bright little girl. One doesn't exclude the other. The level of support someone with autism needs might change as she grows older. Having the diagnosis now will help her in the future.

CHJR Thu 15-Dec-16 10:03:46

Nothing to accept or not accept, in a way, if it doesn't change the actual situation on the ground. The words ASD will not make her on spectrum or not on spectrum. You certainly don't have to tell anyone. If anything ever does happen, you can invoke the diagnosis then. Do remember that ASD presents very differently in different children, and especially, differently in girls than the traditional stereotypes. It sounds to me as if you're doing very well, you got her diagnosed (good parent!) but she's thriving still.

Katy07 Thu 15-Dec-16 10:06:42

Exactly what putsomepeas says - not needing support now doesn't mean she won't at a lot of different points in the future - childhood and adulthood. Having a diagnosis now means that it will be easier to get help, whether it's official help or just a school or employer being aware of difficulties.It may also be easier for her too - easier to understand why she might find some things harder than others seem to. It's not much fun when you feel different but have no idea why. I really wish I'd been diagnosed as a child but it wasn't available then.

Tenpastlate Thu 15-Dec-16 10:07:09

I can totally empathise, I feel like we are 'overreacting' sometimes since DD's hfa diagnosis because other people think she is just shy. But she really struggles to 'mask' and it takes a lot of energy, and like the PP said, high school has been a huge jump, and she's needed lots of extra support from the ASD team and teaching assistants.
I too see much of myself in DD, and have gone on to be happy and successful, but I have struggled with depression and anxiety and low self esteem and feeling 'different' when I was younger, so if support is available for DD due to her diagnosis, I'm happy.

0hCrepe Thu 15-Dec-16 10:07:29

You don't need to tell anyone unless you want to. Label or not she's your dd being herself. Symptoms often go up and down, often with anxiety levels or tiredness. Children often aren't diagnosed till later because 'signs' can be normal development tied in with hearing or speech. Try not to worry about the diagnosis but you have it in case you need it in future.

EnglishNotBingo Thu 15-Dec-16 10:14:41

My DS was diagnosed formally at the age of 5. People had suggested or implied and I had denied it, then when his very excellent school suggested we get a specialist in for an assessment I was distraught.

But it's fine, really. I find that it changes little about the day to day reality of our life, but knowing he is ASD means that we can go forth. The diagnosis empowers us, really. In that, from reading i have a better understanding about various issues he faces (sensory mainly) etc. It allows me to cope better and to understand better, and that has made things better and has allowed us to carry on with our lives much more calmly.

I actually have come to really embrace and welcome the diagnosis. We have become involved in some local groups - a play club for example. I also find that my son's quirks are just so delightful, that I embrace that too. We are lucky that his school are just fabulous. They are so supportive. I would say that all in all this has enriched our lives in so many ways.

I guess what I am saying is - embrace this. It is what it is. Part of life's rich tapestry. As for telling people, I have not told many people. I sort of think that until my son can understand what autism is then it is not necessarily something other people should know before he does, IYSWIM. People do twig though, but that;s fine. I want to explain to DS first and then he can decide what he wants people to know.

RocketBaba Thu 15-Dec-16 10:17:24

Thank you. I've confided in 4 friends. 2 saw it as obvious, the other 2 seemed a bit outraged and talked of second opinions.

I wasn't proactive and a great parent to be honest, borderline obstructive to appt, but honest when I did go.

Dd doesn't go to nursery, I gave up on managing the fall out when she was 2. I don't know how she'd be now, she's adamant she won't go but I think there's a possibility she would like it, or parts. Or maybe it would fall apart!

NowtSalamander Thu 15-Dec-16 10:20:48

Hang on to it. When you get her to secondary school it will be a lifeline and she may struggle with adolescence and need extra support from school.

Why query it? No one has to know apart from teachers.

Kiwimiri Thu 15-Dec-16 10:25:26

I found Tony Attwood's profile of girls with ASD very helpful, I do recommend his books.

Verbena37 Thu 15-Dec-16 10:31:27

DS (11yrs) didn't show signs of what I would assume to be HF ASD when he was little but looking back now, having his diagnosis, I can clearly see why he is autistic.

Instead of going down the ASD route, we just viewed his atypical behaviours separately and no health professional until two years ago, ever suggested otherwise.
We had him seen by a paediatric consultant for ARFID (Avoidant Refusal food intake disorder) and they agreed he had it but they didn't suggest it might be sensory or linked to ASD.

So we carried on like that but as he got older, more and more obvious signs crept in.....until someone on mumsnet suggested he might have PDA.
It was that we had him privately assessed for and his diagnosis became HF ASD with traits of demand avoidance.

I was so relieved that we could finally group all of his behaviours together and get better school support.
It is hard though because my DH's parents won't seem to accept the diagnosis and dismiss anything I tell them DS is doing because of his autism. They make out that all kids do that or "he is only mildly autistic" etc.

I can totally understand how you're feeling about your DDs diagnosis though. There are some days that DS is so manipulative I do think to myself for a split second, there is no way you're autistic. But that's normally because he is swearing at me and I'm shattered. I then pull my myself together and tell myself he is always autistic and his behaviour is a reaction to the anxiety of daily life he has.

As he has got older, and now he is at secondary school, his support needs are greater than they've ever been. Everything is so fast paced and hard to understand for him. It matters not if you don't tell friends and family your DDs diagnosis but at some point, you might need to acknowledge it more to gain access to support services.

EnglishNotBingo Thu 15-Dec-16 10:31:29

Yes I agree- Tony Atwood is very good indeed. smile

Morifarty Thu 15-Dec-16 10:32:24

I think it's important not to put too much stock in what your friends say.

My child has ASD, and through support and changes at home, and methods of helping them cope, things have been significantly better over the last couple of years. When I mention the ASD to some friends, they express disbelief. Because some people have a very blinkered view on what ASD is - they "know" someone with a child who has ASD who behaves in a certain way and that's what ASD must be. They all become experts in their own minds.

But they aren't. The professionals you have seen with your child are the experts. And the support you access, and the help you give your child helps them to cope with the outside world a little better.

I always think it's important to remember that a diagnosis doesn't change your child. If you hadn't have chased one, nothing would have changed - the ASD would not have gone away. It doesn't make your child someone different. But it does allow access to support.

Don't pay too much attention to what your friends say. They don't know it all. And you will soon become used to having people "help" you with their unqualified views on ASD - a lot of people seem to have them.

EnglishNotBingo Thu 15-Dec-16 10:42:55

I agree with what others have said - the diagnosis has not changed your child, and not having a diagnosis does not make it go away.

I said to our specialist I was worried about stigma and labeling. He just said that a diagnosis is irrelevant, people would label him anyway. It sounds odd, but I actually found that statement to be very helpful. Almost as if it liberated me from my own fears if that makes sense.

Your child is your child. In all her glorious, unique, wonderful ways. Having a diagnosis means you can access support, when you need it, as others have said. That is a good thing. smile

FWIW, I often think that maybe we were over-reacting, but then DS does something and it is like a jolt that reminds me that it is a real thing. It is something that affects him and how he experiences the world around him. But I KNOW that, and there are so many wonderful academics and psychologists out there who can help me navigate the path.

BarbarianMum Thu 15-Dec-16 10:43:55

My friend felt similar about her son's HFA diagnosis when he was that age. At home, around town with her, he didn't really 'present' as autistic at all. When he started school though - well then he 'presented' all right - he found reception/Y1 really difficult and the need for support was very, very real. Poor kid. sad

These days he's doing well at Secondary. He doesn't need 1:1 support or to use the learning centre but he does need the understanding from his teachers and peers that some things are very difficult for him. He also needs his hall pass so he can take himself out of a classroom if he gets overwhelmed, or can move classrooms just before the bell goes to avoid the crush.

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").

Ultimately though, if it never reappears and your dd continues to pass through life with no problems, or at least no need of support, then you can forget all about it.

SparkleSoiree Thu 15-Dec-16 10:45:33

It's very difficult sometimes to process an ASD diagnosis. Parents reactions range from outright refusal to accept through to relief at receiving confirmation of what they already knew. In a lot of cases parents grieve the child they thought they had or don't have. It's different for everyone so it's quite normal how you are feeling just now.

I used to have similar thoughts about my DD with Asperger's when she was diagnosed at 4. DD's ASD was really obvious when she was younger yet in the couple of years following I felt almost fraud-like discussing her diagnosis with those that needed to know because she seemed to cope better (actually masked better). However as she has gotten older her academic ability has emerged in Maths and Science and whilst that has gone from strength to strength other areas have regressed and there is a wide gap opening between DD's academic ability and social and emotional development. This is now affecting DD's ability to cope with many situations and I now have a 9yr old young lady who lives in two environments; her bedroom and her school. Anything else is just too much for her to cope with.

I am not saying this is the same for all children on the spectrum who seem capable when younger but I am saying that traits can diminish over time and new traits can appear affecting the capability to cope with day to day living. Peaks and troughs is probably a better way of saying it. Every child with ASD is different though, no two children will ever have the same profile.

It's also worth remembering that ASD diagnoses are not given out without clear evidence that meets a laid out criteria because nobody wants to mis-diagnose a child. A misdiagnosis can do as much damage as no diagnosis. The fact that your DD is diagnosed now will ensure her ability to apply for support should she ever need it in the future. Or rather, enable you to advocate for her to access that support.

Good luck.

RocketBaba Thu 15-Dec-16 10:56:33

Thank you, it's refreshing to hear from those further on. I've read all these a few times.

blankmind Thu 15-Dec-16 11:01:18

You've received some very good advice so far.

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

A lot of women realise they and/or their partners or other relatives could be on the spectrum after their child has been diagnosed and they know some of the signs.
Also, the autistic spectrum isn't linear, there's no cutoff point, no "line" to be crossed that defines autism, it's a triad of impairments which will either be clinically diagnosed or not.
The SN boards on Mumsnet are also a very good source of advice from parents who know exactly how you feel right now.

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
Stop worrying about other peoples' images of how an autistic child presents, they don't know, they aren't qualified to diagnose, just help her when she needs it. Morifarty has explained that very well.

You'll often find "friends" suggesting she must have "mild autism" so just nod but bear this image in mind.

I have hf ASD- or Aspergers- and it's not at all obvious to others. Looking back my issues got worse the older I got - at the start of primary school I coped ok socially, but it got gradually worse with me moving to being on the fringes by the end of primary and struggling massively at secondary. It's like my social development just didn't keep pace with my peers, and even now I struggle to make proper friends.

My language development was never a problem, I was miles ahead of peers and probably hyperlexic

Titsywoo Thu 15-Dec-16 11:17:48

I get it. I really do. DS was diagnosed last year. It only happened because DH had a bit of a breakdown about how unhappy he was with his relationship with DS. There had been 'something' about DS that seemed a bit off since he started nursery (and therefore interacting with others kids outside of family and close friends). Noone could really put their finger on it and we all said "it's definitely not autism" because so many of the characteristics didn't fit. But it was autism. I still struggle to accept it. Not because I don't want him to be autistic (it doesn't bother me) but because somehow it doesn't sit right. But when I read Tony Atwoods book about Aspergers it's like reading about DS to the word. So I know he is. He doesn't really struggle now which is great and which is why I haven't told him about it. But chances are once he gets to secondary he will be affected more. So I accept it and it lives in the background now which is all he needs (he has speech therapy, OT etc but just sees those as parts of his education). I love this article and this guy when I look at my reasons for not telling my son yet autisticnotweird.com/when-should-i-tell-my-child/. I do however accept the diagnosis as they are so comprehensive I doubt they 'get it wrong'.

The thing with autism is it is quite hard to understand. If your child is high functioning then sometimes you think but they are 'normal' with a couple of quirky habits (like all of us really!). Why give it a name? How does it help? I'm still trying to answer those questions myself to be honest...

It will help once he's older- I actually got diagnosed as an adult because I was struggling at work. Being able to say "I have Aspergers, this kind of casual networking event is very difficult for me" makes a huge difference

BarbarianMum Thu 15-Dec-16 12:16:54

It may help him understand himself Titsy Because he will notice that he is different, and struggles with things that others cope with just fine, and quite possibly finds easy some things that most people struggle with. It is quite nice to know you're not alone.

Cherylene Thu 15-Dec-16 12:45:44

I did know someone who refused to have her DD assessed. When I looked at photos of the DD, where she was looking at her parents, she did look like any other child, so I can see that from her point of view, she looked fine. And as an only child of older parents, a lot could be explained away.

She did go through an awful lot at secondary school though. She was not coping well socially at primary, so by 13 she was totally left behind by her peer group, as Statistically describes. The parents were very frustrated and always trying to get the school to meet her needs, without going for any assessment.

I have a DN who is more severely autistic and my DSis has done many courses and classes and has become a huge expert on autism - it is also useful with her job where she deals with the general public ;) She is amazing and a tower of strength and so is DN. You can do so much with young children, but when they get 13 and the gap with their peers is wide and they start struggling and want to be grown up and not told what to do etc it is much harder.

Titsywoo Thu 15-Dec-16 12:48:00

Yes but he doesn't think he is different barbarian! I've gently tried to bring up the subject and he just gets a bit annoyed and "what do you mean? I'm the same as everyone else" grin. So I think telling him outright would be a bad thing right now. I mention ASD and aspergers quite a bit in a positive way so will be letting him know gradually. It's what works for us and I hope for him too - not everyone is the same.

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