Push to diagnose or not...?

Hello everyone, I am new here. I'm sorry if this gets long, but I'm wondering is a diagnosis always worth having?

My daughter (age 10) has some real struggles. We have suspected for a while that she has some signs of being on the spectrum but we’re basically out of our depth knowledge-wise, flummoxed by the system and she seemed to be getting on okay. However, the last few years have seen a worsening in her behaviour. We’ve seen (and been discharged from) a support worker and I must say her help was valuable in structuring behaviour management techniques etc. But obviously only eases the symptoms of the root problem.

We had a referral to CAHMS mainly as she voiced depressive thoughts, but they gave us a questionnaire on ADHD after a telephone conversation. No one mentioned ASD. At the time I wanted to see what they said and not try to lead if you know what I mean. She scored quite high on the at-home questions but low on questions at school. So we were discharged from CAHMS as they suspected it was probably behavioural. At school she is very quiet, doesn’t contribute in class or produce much written work unless coaxed and cajoled. But her behaviour is great! However, outside of school is a different matter. For example this weekend she refused to leave a local forest because a dog pinched the stick she was using for her rope swing. She wanted us to chase down the dog to get it back. Ended up having to take her back to the car holding her arm (so she didn’t bolt off). She was threatening to bite me, spat on me, hitting me etc. Shouting and crying and demanding we get the stick.

Now, I know that this just sounds like just bad behaviour. But this is what she’s like every time we have to leave somewhere fun. Every family day out ends in tantrums. I have had to restrain / escort her back to the car with her hanging off me, kicking and screaming so many times. I KNOW that this cannot be normal for a girl her age. If it hadn’t been the stick it would have been something else. My gut feeling is that it isn’t bad parenting. I know we haven’t always handled things the way we should be we’re not slack, we follow through and we have boundaries. We HAVE to because of how she is.

One of the reasons I’m hesitating is because she is very good at taking on a part. Like, acting a part I mean. It makes it very difficult in day to day life to know whether she means what she’s telling us. Like, during Halloween she very convincingly became afraid of a toy spider. Knowing what she’s like I took it with a pinch of salt and later on she was playing with it as normal. When she hurts herself it’s hard to know how much she’s hurt as she acts up so much. She had a conversation with hubby about appendicitis one time and that night she was up for hours crying because she had tummy pain and she wanted to go to the hospital with appendicitis. Some of her bad behaviour has characteristics of things she’s heard on YouTube or whatever. I’m scared that if we mention ASD to her in any capacity or she figures out that’s what she’s being “tested” for then she will play the part. Or play up to it.

I feel so incredibly guilty for saying these things. Acting and drama are actually her strong points, she’s awesome at it!! I make it sound like she’s manipulative but I don’t think that’s what it is. She likes to experiment with playing different parts.

We (my husband) once made the mistake in trying to explain to her that she has anger issues which is why she struggles with things and she just used that as an excuse when she was mad. “It’s not my fault, I have anger issues!” I don’t want her to do the same with ASD if we start down this path to a diagnosis. Yes, much of it may not be her fault. But, do you know what I mean?

My husband is in agreement with me that something isn’t quite typical with her but is dragging his feet on going down the diagnosis route. Our families are amazing and help a LOT. Unfortunately, because she’s comfortable with both sets of grandparents she also acts up for them and has been quite violent towards her grandad, in particular, poor bloke. I think they’ve finally clicked though that there is to be no winding up etc. They can’t tease her like they can my other two. It was incredibly hard last year as hubby was working away a lot so I was handling it all on my own. I think that’s mainly why it got so bad that I had to self refer to preventions. I was stressed so instead of disarming her I was feeding into her aggression and making it worse. So now hubby cut his hours and only works locally. It’s less money but he needs to be here more. She’s in school so that gives us a break and weekends are a team effort. Plus, now we know when she’s likely to be a challenge we can anticipate it and work on a technique to manage it. Or if we can feel she’s building up to a meltdown we can give each other “the look” and we know to switch to evasive manoeuvres.

No one in our family has said anything negative but I’ve definitely felt like it’s all our fault as parents. You’re constantly told that parents are the ones to blame for their children’s bad behaviour. When she’s being wild in public the disapproving looks and stares I get are awful. And it’s worse as she gets older. When someone sees a ten year old hitting their mum and shouting “YOU’RE A F****** ***!!” at the top of her voice they just automatically think she must be a spoiled brat. Yes, lots of her issues have definitely got better with more consistent and improvised parenting techniques, but that only does so much. It’s only dealing with the symptoms and not the root cause. I’m leaning towards trying for a diagnosis if only because I’m dreading the teenage years with hormones kicking in. I just think if she’s THIS bad now when I’m still physically stronger (so I can chase and restrain) what is she going to be like when she’s bigger and also not under my direct line of vision or control all the time. Cry I worry so much for her. Plus she’s had depressive / anxious episodes before where she’s got so upset she’s said why don’t you just kill me so you don’t have these problems with me. I don’t want that to turn into anything more as she gets older either. 

So basically, will it change her life for the better to try to get her diagnosed or will it make her sad that she’s “different” if we try to label her? Can we manage this on her own? Will the school still support her and her idiosyncrasies even without a diagnosis? Help!!! I don't even really know where to start. Do we go back to the GP? Do I speak to her about it and see how she feels? 

[Edited by Moderator]

  • I would definitely ask for a asd referral. There will be a waiting time obviously. Sounds like she could be on the spectrum. My son was diagnosed with asd early in the year after a 2 year struggle, adhd test came back negative so now we're on tourettes symptoms and sleep therapy. Go back to the GP, you know what's best go with your gut, I've found that until you have paper with an official diagnosis no one takes you seriously or listens, and when what I knew all all was confirmed I told them all I told you so now what are you gonna do to help my son. Hope you get the help and answers you need 

  • I would say for school a diagnosis is very helpful to give your daughter support. Especially for sensory issues. I am waiting for a diagnosis for my son but they are pretty sure that ASD will be the outcome. It is important that school distinguishes between poor behaviour and emotional overload or sensory difficulty. A diagnosis might help your daughter understand her struggles. 

  • Can I ask  what the neurodevelopmental testing was like for your son? 

  • Hi 

    My 9 year old son was diagnosed very recently. I can relate to a lot of what you have listed as your daughter's difficulties. I too had doubts about diagnosis, but my son was starting to talk about suicide and was really struggling at school, so l figured l had to do something. I was really surprised at how certain they were he was autistic and in some ways if was very validating. As a parent you should trust your instincts. He had a little cry when  l told him he was autistic but he's now choosing to tell some friends and seems to be taking it in his stride. He asked to leave assembly today due to noise, whereas previously he would have just acted out and gotten into trouble.  So, l think using the label was validating for him too. Myself and the school are reiterating that it is not an excuse to get aggressive, at least now though we can work on communication and emotion management skills and explain to him why he gets so upset.  I think it is opening up dialogue rather than making his behaviour worse. I hope that makes sense and happy to chat more. Another point,  have you looked at the profile for Pathological Demand Avoidance as if may be relevant.

  • Thank you so much for your reply. I’ve started keeping a list of the things that pop into my head that seem unusual. I feel quite bad making a list of behaviours like this, but I wanted to make note so that I could ask the doctor if we see them. 

    • Hugs but doesn’t cuddle in, just sort of leans / lolls.
    • Finds it incredibly difficult to stop doing a thing and move on. Leaving after a day out, going to bed to sleep at bedtime. Behaves badly at the end of a weekend / school holiday.
    • Doesn’t know when to stop in teasing games. Doesn’t know where the line is. Will continue until the other person gets really annoyed.
    • When she’s upset she wants her teddy rather than mum sometimes. Her teddy is ultimate comfort.
    • Is overly affectionate with best friend sometimes. E.g. on sports day they were in separate teams. When they meet up at the end and sit together she grabs friends arm and hugs it tightly for a long while. Friend behaves like this is nothing and just sits.
    • Doesn’t like loud sounds. At a noisy assembly in new high school she burst into tears as it was too loud.
    • When I hug her cheek to cheek she tells me off for breathing in her ear. Every time. Every single time. And pulls away cause it’s annoying.
    • To get any work done she needs to be cajoled and coaxed and constantly reminded to smile extreme level - homework, tidying her room etc.
    • Doesn’t initiate play or conversation with new children e.g. on holiday. Will just stand nearby and hope they engage. Gets frustrated as brother talks to anyone and always makes friends.
    • Wants to be alone. Will be seen alone at school but is quite happy. Will come in from playing out with friends because she wants to be quiet / alone. Or would rather try to go on tech.
    • From being a baby needs constant entertainment. Has never played alone by choice.
    • No patience if it doesn’t go to plan when making something e.g. train track won’t fit together. Gets angry fast and turns to blaming others.
    • doesnt seem to notice / care when little brother is upset at something she is doing. She just continues. Sometimes it seems she’s even noticed he’s unhappy but continues anyway.
    • seems to constantly play act. At the moment she idolises her older cousin so dresses like her and acts that way. 
    • When she tips over into anger (usually when it’s time to go home after a fun day or if she can’t control a situation) it escalates out of control. She will run off or become unsafe. I have to restrain her by holding her arm and walk her back to the car to calm her down and she will kick, hit, spit, threaten to bite. Swear at me, shout. Hang off my arm, go limp etc. 
  • That sent before I finished. But you need an assessment either way. If she has ASD the noises, lights etc and the way their directed may affect her learning but ADHD is different I think so it's important to get this right.

    .Maybe list some traits you think are asd but I think I'd go for an assessment in general if shes struggling

  • What ASD traits do you think she has?