Published on 12, July, 2020
Hi Please can anyone help.
I am a single Dad and my little boy (9yrs) has autism diagnosed 6 years ago. He is very limited in language. Hes always been VERY happy and placid.
He has always been fond of bizzare repetetive rituals at various points in the day. While these have been difficult, they have been manageable. About 6 weeks ago they started escalating (no obvious anxiety cause unless during school. School are not good, hes in mainstream with 1-1 and they always want to move him), though still managable. 5 days ago they suddenyl escalated off the scale.
Right now, we are housebound, hes off school and im off work. He cannot get over the ritual of getting up so is not even dressed or nappy changed. When I have got him up, he couldnt get through ritual to leave the house to the car. Bedtimes are a nightmare being still awake at 4am until passing out before completing rituals.
My guess is that the rituals are bourne out of anxiety control, but I do not know this.
I have no support structure at all. Things were so good he was discharged from pedeatrician years ago.
Ive contacted emergency social services and they are assigning a help officer but it takes time. I applied to CAMHS but its a 6-month waiting list. I contacted my GP and he is trying to help but seems to not be fully knowledgable.
Right now, my boy is saying no to everything and it seems a lot like PDA
The Dr initially prescribed ritalin (adhd drug though he isnt adhd) and it did actually seem to make him calmer to avoid meltdown when trying the rituals but it didnt change the rituals or need to do them, they seemed to take longer. It did stimulate him to be lively awake until past 4am in the morning which was awful after nights of 2am and 3am so I asked Dr for something different.
Dr changed to Diazepam for anxiety and Phenegran for sleep. Tried it last night. Diazepam didnt seem to have any noticable effect though rituals were taking even longer. Sleep med did make him sleep before end of rituals and we have a good nights sleep for first time in ages.
This morning he woke and I gave him the does of Diazepam. He hasnt been cooperative at all. Wont get ready, wont have nappy changed. Seems actually exciteable.
I dont know what to do. I am waiting for social and CAMHS but it will take so long. Dr is referring me back to pediatrician but again will take a long time. I just dont know what to do tonight.
Do I go back to ritalin (this is a stimulant which worries me) as he seemed better than diazepam even with late night, but maybe with the sleep med it would be better?
Do I continue with the Diazepam and sleep med another night?
Do I knock off both Diazepam and Ritalin and just let him clear system and use sleep med?
I just dont know. I would ask Dr but I think he thinks Ive bothered him a lot and am not giving things enough of a chance (these meds are supposed to act straightaway though not like SSRI's) and I also think hes out of his depth of knowledge.
Please please any advice?? Anyone had/have similar?
Please help, im so tired and feeling like its getting worse every day and dont want to establish this current state as my sons new lifestyle.
Please help.
Alex
Hi Alex JM
Sounds like you are in a difficult situation at the moment. I want to give you the number to the NAS helpline as they may have some advice or further connections/information that could help.
You may like to contact our Autism Helpline team who can provide you with information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform:
https://www.autism.org.uk/services/helplines/main/questions.aspx
Hope this helps,
Nicky-Mod
Hi Alex I have a pda 12 year old boy who is also Adhd, his Adhd meds made him very down and moody so we stopped them, when we saw his Adhd nurse she told us that what can happen is you give the Meds and it controls the Adhd but the behaviour your left with is the Autism behaviours so they can seem quite magnified.
his sleep is poor but we don’t allow any electronics an hour before bed also a red light bulb or night light helps produce melatonin.
I also have a 9 year. Old who is very much the same as your boy too, I’ve noticed he seems to have gone worse I don’t know wether this is an age thing maybe starting with the hormones but he is hugely filled with anxiety doesn’t want to leave the house scared of a lot and when he clams up and his mood changes we know that he is basically ready to vent we just have to try and get it out of him and when he does he will have a meltdown but after he will be calmer for it, we try talking, pictures anything to make it easier to communicate I’ve even tried the apps with the voice changer lol.
weve only just got our diagnosis for both boys so we are in the position of waiting for help too hope you get help soon,
Thank you very much.
Hi Alex and welcome to the forums.
As an autistic adult, I'd guess you're right about the anxiety. Unfortunately changes and your anxiety might be adding to that. The rituals are probably a coping mechanism. I keep posting this link about PDA from an autistic mother of an autistic child:https://autisticmotherland.com/2018/05/23/pda/
I can't advise about medication. Good luck with CAMHS.
By the way, you may want to change your default username of NAS3xxxx, so we can recognise you. Just go up to the round button on the very top right of the page, click that, then Profile, then Edit profile.