8 year old Autism/Intrusive thoughts

[Mumma29x]

Hi,

Basically a long story but my 8 year old daughter over the last few years has shown a lot of signs that we have thought autism or something else. She has had tics over the last 2 years which come in waves they will be severe where it’s disturbing her school and constant then they will calm down again. The tics have been eye blinking and making a croaking noise with her throat and sniffing her nose. She had an initial appointment with CAHMS around 15 months ago whom said that they don’t think my daughter has behaviour or mental health, they think it’s more ASD and have referred her to be seen by the autism team. She takes everything very literal and if she feels she is getting treated unfairly or there is an injustice it causes a war in our house. Fast forward 15 months and we are no further along with the autism assessment but things got so severe that my daughter has been having intrusive thoughts saying her brain is telling her to kill mum or dad, put a pencil in her head, touch a knife off her, put bobbles around her neck, she has been worrying 24/7 for the past week. She is very worried about germs like touching her tshirt and then touching something else, or fixing her trousers then touching something, she feels dirty. Also she told me that one of her friends in school (p4) male told her that his neighbour (p7) also at the school flashed his privates to him. My daughter has been obsessing over this every minute of the day and says even the thought of this boys name is worrying her. I was worried sick and asked if anyone has ever touched her private body parts or asked to see them or showed theirs to her and she says no. She is worrying about really small things all throughout the day and says she has to tell me all her thoughts for it to make her feel better. This has been sometimes around 70x per day. As some of the thoughts she has been having have been unsafe, I phone the autism team whom passed me back to CAHMS. They arranged an appoint and we were seen with two child psychologists. In assessment telling them everything, also forgot to mention that my daughter has a lot of routine things she does such as shakes her feet coming out the shower 30x each, kisses her teddies in a certain order each night, has a handshake she needs to do with teddy (roll one sleeve up then the other, kiss the teddy. Say no love you, shake the hand each and then kiss it again), pinching her arm while waiting on game loading, loads of little repetitive things like that. She also repeats the same words and has done for years a lot. The main one is love you she says it constant and you have got to say it back each time. When she goes out the living room door she goes love you mum, love you dad, love you honey (our dog) love you Aaron (her brother) every time. She also has been saying she is touching her privates incase there is tissue paper in them. Anyway after assessing her CAHMS have said that they don’t think it’s mental health and all this is because she is ASD. Basically we are in same position as they said they will write a letter back to autism team to keep her on the waiting list. I honestly don’t know how to cope in mean time with all these thoughts from minute she opens her eyes until she goes to bed. I am reassuring her in every way I can but it’s not working. I don’t know how my daughter can cope like this every day is like torture for her and it’s taken her happiness away. Also my daughter mostly is the sweetest extremely caring person and the psychology it’s said that’s part of why she’s worrying so much as she is very empathetic and caring so she is thinking in to everything. I thought she would have OCD and we would get some help for this! Sorry for the long post, I am really looking for someone who has experienced things like this and what help is there? I’m at a loss and really want to help my daughter. We are in Glasgow.

Hi there, OP. We're going to move your thread to our special needs children board now as we thought there may be some parents there who can offer good advice. Hope that's ok - do drop us a line if not!

Hi thanks for moving my post to this forum, never noticed this one!

Hi OP, this all sounds really tough.

Have CAMHS discharged your DD or is she still under them?

She may well be autistic, and needs to be assessed and diagnosed for that - it's good you're on the waiting list - but to me it sounds like even if she already had an autism diagnosis she should also be under CAMHS, as her intrusive thoughts and obsessive behaviours sound concerning to me. Did CAMHS mention anything about OCD?

If your DD is undiagnosed autistic, then it's possible many factors are playing into her anxiety, and it could definitely help to look at these ... eg social understanding, friendships, sensory issues ... but I would still think she needs CAMHS for the behaviours you describe.

Have you looked into pandas at all? I know it’s a controversial diagnosis and I don’t want to wade into the pros and cons but it might be worth exploring as the treatment (antibiotics) is fairly simple and cheap and it’s therefore easy to rule it out.

@quickchangeof CAMHS have discharged my daughter just that one time seeing her, the initial appointment last year was online. I am disappointed and I brought OCD up and they have said it’s more autism, I don’t understand why the intrusive repetitive thoughts aren’t even been considered as OCD. I would have thought CAMHS would have helped her after me initially phoning the autism team and them sending me to CAMHS 😥

@Seasidetrains

I have never heard of that and just looked it up. Very interesting as although she has always had little bits and bobs going on the tics developed around a year ago and the extreme thoughts and repetitiveness have ramped up to a whole new level the past few weeks and went from manageable to completely unbearable for her. Is this something that GP’s can rule in or out? It’s so confusing everything going on as I know my daughter has always been a little different but things have took such a turn all of a sudden it’s hard to understand why.

I’m sorry to hear all that you’ve been through with your daughter. It sounds like a lot to cope with and she must be quite distressed. I don’t really have any experience and don’t know what the processes are in your area for accessing support, but would definitely be asking school for support. Also, have you flagged up with anyone what she has said about the child exposing himself to another? There may be truth in this and if so it needs investigated so please speak to either the parents of the P4 child or someone from safeguarding team at the school these children attend. Can you speak to the autism team again and explain that your daughter has been seen by CAMHS and they feel the issues are arising from autism? Also do see your own GP again.

Unfortunately whether or not your gp believes in pandas is a bit of a lottery. There are private Drs that can write prescriptions but they are expensive. That’s where I think the lines get blurred as to whether it’s a genuine condition or
people just trying to make money off desperate parents. But I think if your DDs intrusive thoughts coincided with any kind of illness it would be worth asking your GP to rest for strep (ASOT and anti-DNase B) as a first step. I hope you find help from somewhere it must be very tough xx

My first thought on reading this was OCD.
I grew up with a sibling with this and it mirrors what you’re seeing—
tics- clearing throat, saying words under breath
ritualistic behaviours.
Having to do things a certain number of times.
needing constant reassurance or something bad will happen etc.
fear of germs/illness

all very similar. If it eases your worries, my now adult sibling has explained that the ‘bad thoughts’ were intrusive thoughts- like if I don’t put this pencil down 40 times, my mum will hurt themselves in a car crash.

it’s all driven by anxiety/ change/ transition.
plus all neurodiversities can have cross over so she could have a dual diagnosis, but, even from 2 sentences in, my first thought was ‘ocd’ - do raise it with them again.

Hi, this is my first time posting and I just wanted to say I am having the exact same issue with my DD 8. Around 2 years ago was in contact with CAMHS with what I thought was OCD and anxiety, they discharged my DD stating she was displaying traits of autism and not OCD and that I should work with school to do an autism referral. School have only just got around to doing the referral as she is masking so heavily (hence the anxiety) and obviously there is a long wait for that, in the meantime DD is distressed on a daily basis with the intrusive thoughts and routines (amongst other issue, such as sensory and communication).
She calls her inner voice "meanie" and literally tortures herself all day with a constant narrative of what meanie tells her to do. She has also said things to me like meanie said I should kill you etc and used to repeatedly hit herself in the head to rid herself of these thoughts. Bedtime has become traumatic and can go on for hours as meanie is telling her to things in a specific order etc, in a similar way you describe, and the rituals are taking over her life and distressing her. It's difficult to handle as she has to tell me as they get stuck in her brain otherwise. I've spoken to her about negative thoughts and inner voice and I'm trying to get her to understand that meanie isn't a third party telling her to do things, it is part of her inner voice and if the thought isn't helpful or important or it's not a realistic worry then she should tell it to go away. I think she now understands what an intrusive thought is but she is still blighted by them. Some of the rituals are causing distress as DD had an inability to control them, with a lot of push back from DD I have taken away some of her soft toys etc, this has helped at bedtime and now she is noticing when she is getting stuck in a loop with things and tells me to take them away, which is progress.
I think for my DD, this is due to anxiety, which has been very high for the past couple of years due to struggling at school etc and she seems to have a real need for control. I am trying hard to work on her anxiety but this is proving difficult as she doesn't want to engage with me as although DD can talk for Britain, she has to control and dominate each conversation and is not interested in me talking about anything for more than a couple of minutes.
As others have said I would look into whether anything is causing her anxiety, my DD is very vocal (to me anyway) about some of the things that cause her stress, but it could be possible that your DD can't put her finger on potential stressors such as friendships, not quite fitting in, sensory issues? Can I ask does she behave differently with you that she does elsewhere, for example is she able to hold it together at school then blow up when she gets home?
Sorry I've not much to help you with, but it does seem we having extremely similar experiences.