Lost & alone

Thank you for telling me about the YouTube channel, I’ve had a quick look at it and there is some really interesting information.

I tried to find how I can private message you to chat but I can’t find it. Do you know?

NAS72884,

It must be really difficult for you both. Coming at it from a different place, I’m 38 a mum of a non-autistic boy but am autistic myself. If you ever want to chat I’d be happy to pass on my email privately. Having grown up in regular school I can maybe offer some help about what it’s like and maybe a bit into the experience day to day of having ASD level 1. I still struggle even now, and am reluctant to put my own son in to school because of my experience (a good education all the way through to uni and part of a masters degree, but very difficult times).

I know all of our experiences are very different but I’m here if you need support, it can be very lonely on both sides I know.

There is a channel on YouTube called Aspergers From the Inside, by a man called Paul. It’s really really a great resource for understanding what it’s like to have Aspergers/ASD level 1 and might be helpful for you in understanding your daughter and finding ways to communicate about it.

-L

Excuse my ignorance but what is a EHCP?  Over the last three years the has given her time once a week with, essentially a teacher to chat to, an 8 week course of a not quite CBT course and now the pupil support worker who has had a positive influence however since she has gone off sick E is finding it more and more difficult to attend school.  They also gave her a red card to leave class if she felt the need to but she is so worried about being different that she won’t use it.    The school did refer to CAMHS but by the time she got the appointment she was no longer willing to talk and because it was lockdown it was over the phone so it was easy for her to not engage.

ive actually just been speaking to my Dad who has just said that maybe going down the private route is the way to go.  I appreciate you suggesting it. Thank you 

Another thing I'd do is a LOT of research on ASD. Really educate yourself on it & its various forms. Also look into anxiety, ADHD & PDA. Feel free to message if you want to chat in private seeing as I have been through this situation twice myself. Good luck.

I would 100% start the ball rolling for an assessment. How can your daughter ask for what she doesn't know? In an ideal world, going on my own experiences with 2 girls (now in their 20's) getting diagnosed after many years of being let down, at the ages of 11 & 18, I'd get her privately diagnosed ASAP. If I could turn the clock back, that's what I'd do. 

What support are school giving? Has she been assessed for an EHCP? I find it really odd that an Ed Psych would suggest not going for a diagnosis. Even if your daughter is currently refusing to be assessed, which at the second attempt, my eldest was, (which caused such damage to her mental health) then I'd start saving & have the money put aside for a private diagnosis as soon as she is willing. 

With girls the main issue, in my experience, is severe anxiety, so even if you don't pursue the diagnosis I would seek out support & treatment for this. It helped my eldest enormously when she went on meds for her anxiety. It was truly life-changing.

Ed Psych said that she felt given her significant progress and the anxiety that they felt the strategies would be similar whether it be autism or anxiety and they would continue to support her with strategies regardless.  They felt that if my daughter was asking for it then definitely but if it was me wanting to know then they wouldn’t recommend it.

My daughter has no idea, although very articulate she seems unable to communicate to me what she is feeling or what she thinks is causing it.  Unfortunately she is very good at giving people answers that she thinks they want to hear or that will get them to leave her alone.

she has had a CAMHS referral and wouldn’t engage, I got her appointment to speak to a councillor but she wouldn’t engage.  The not speaking to anyone is so hard, how am I meant to help if she won’t accept it.

I feel very conflicted and don’t know what the right thing to do is

Hi NAS72884, thank you for sharing on the online community. If you were interested in finding out if your daughter is on the autism spectrum, you would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis.

If you have further questions, you may like to contact our Parent to Parent service, which offers emotional support and can direct you to appropriate services for information and advice. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism. They will be re-opening from 17th May.

You can contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: https://www.autism.org.uk/what-we-do/help-and-support/parent-to-parent

I hope this helps.

Best wishes,

Anna Mod

Am also wondering why the ed psych doesn't recommend going for a diagnosis? Does your daughter even know it's an option? I believe it should be her choice, not the ed psych's.

After re-reading my post and a walk, I realise it may come across as if I am 'punishing' my autistic child. I just want to reiterate I am not. After 12 years or so of learning to recognise my child's triggers and signs of an imminent meltdown or freeze, 10 years or so of reading and talking to people a lot (including other autistics), and my own experiences as an undiagnosed autistic child in the 1970s and 1980s (not fun!!!), I do know what an autistic freeze or shutdown looks like (at least in my child and myself). And this is not it, from what I gather from the teacher's description. The anxiety is real though.

hang on, now I see you asked *how* I got him to school.. I suppose by making it clear I expect him to go to school, but that it's ok when it happens at school as teachers will keep him safe.

I'm sorry, but you're being too harsh and judgemental on me, but I suppose that's the risk I'm taking by being honest in my reply to the other lady, on what I thought was a safe space to do so. I have known my son for 15 years and you only know what you have just read. I have talked to his personal support teacher who described it to me in detail and the sort of freezing he does is unlike  autistic shutdown. I do acknowledge it is an expression of his anxiety, but I can't keep him at home forever, so I support him in other ways and the school is very supportive too. But I shouldn't really have to justify myself on here.

It is against the law not to provide under 16s with education, so if you're not home-educating, they have to go to school.

Yes, he went to school (and has been since) and yes, I think it's anxiety. Normally I don't make a stand because like your daughter it only makes things worse, but this time it seems to be the right response. For the time being. Like you said, you learn to read the signs.

when she "go's into herself" that is the start of depression and self harming  ,i am glad you realize there is no point  in punishing her for being autistic , they don't wont you to get her a diagnosis because then they would have to help her legally, she would have extra time in exams etc

sorrow for being so blunt , but it makes me so angry that so many autistic childrens wellbeing is being so neglected ,you really need to read up and try to understand your daughter. There are a lot of good books on autism in children . 

freezing is  a shutdown it is fairly common and no he would not have control of this ,and it is not against the law to not go to school.  From what you say you are punishing him for being autistic 

It’s so hard I have tried the hard line of not allowing access to tech and other things, telling him that by law she had to go but it made no difference.  In the earlier days I was so torn about how I should respond and had the school and my parents suggesting what I should do. However making a stand just made things worse she either went completely into herself or became filled with rage which she couldn’t control and when she did calm down she would feel so much guilt but was not able to articulate what it was that was wrong.  We have got past that as I have learned to look for the triggers, read the signs and respond in a more helpful way.

out of curiosity how did you manage to get him to school? Do you think it’s anxiety that is causing the‘freeze’?  I know with my daughter and myself that it can be so debilitating.

ive got Facebook, I’ve looked the group up. Thank you for telling me about it.

NAS72884 said:

Sometimes I’m sympathetic and understanding but when I’m feeling the strain and tired I am not so understanding and question myself whether she is choosing not to go or genuinely can’t.

This! It can be so hard to gauge whether it's genuine or not - I suspect they don't even know it themselves a lot of the time. My son now has this thing where he 'freezes', he says he genuinely can't move. We had an appointment with the pediatrician last week and we mentioned it, so he checked all his reflexes etc and said there was physically nothing wrong with him. I'm sure something is going on when it happens, but I am not convinced he has no control over it. I actually think he sort of capitalises on it. So that's what was going on when I refused to pick him up from school, thinking if I give in now there'll be no end to this.. Afterwards he said it lasted two hours and it was hell (to which I replied 'just as well I didn't come to pick you up because there is no way I would have been able to carry you to the car') and he tried to make me allow him to stay at home 'until it was sorted' (which might take weeks or never happen!) and I said no, I couldn't allow him to stay at home forever just because of something that *might* happen, that he has to deal with it when it happens and where it happens, teachers will make sure he is safe. I suggested he make sure he has one of his fidget within easy reach, in his pocket, and the next day I woke him extra early, so to give him time to 'unfreeze' in case it 'happened' in the morning. I also did something I very very very rarely do, threaten with withdrawal of pocket money (which is really not like me at all) and said he *has* to go to school as it's the law (god knows what will happen when he turns 16). So basically I have acknowledged the problem (I'm calling it a kind of panic attack), and have suggested strategies for dealing with it, talked to his personal support teacher, but am refusing to let him stay at home because of this because I'm not convinced he has no control over it...

Are you on Facebook? There is a group called Parenting Mental Health, I believe it's world-wide so there is *loads* of people on it (mostly mothers) but they're really supportive. It's good to know you're not alone.

Thank for your reply.  It’s comforting to hear that someone else understands.  My emotions are up and down, I get so frustrated because all I want is to help her.  She says that she wants to go but can’t.  Sometimes I’m sympathetic and understanding but when I’m feeling the strain and tired I am not so understanding and question myself whether she is choosing not to go or genuinely can’t. I completely understand the feeling of not coping  and to add to it her 12yr old sister is less than understanding in fact she often winds her up which then ends up in a major fall out, sometimes physical and I’m piggy in the middle. It’s emotionally exhausting.

I completely understand that feeling of hitting your head off a brick wall with regards to accessing support, I’ve lost count of how many times she agrees to speaking to someone and when the opportunity is there she doesn’t take it.

Trying to deal with all these things and study for uni must be a real challenge for you, I do sympathise and for your son to be wrestling with his gender must be tough for both of you.

With regard to it running in families, I do believe that her father is on the spectrum and has never been diagnosed.

Hi, not much advice to be had from me I'm afraid - just sympathy. My son is 15, probably autistic, possibly ADHD, hates school (though he is very intelligent) and goes through phases of refusing to go to school. I have let him stay at home several times (especially after long periods away from school, such as holidays or lockdowns) and I try to be loving and patient and understanding at all times (with varying degrees of success). School is very supportive and understanding, but the last time they asked me to come and pick him up I refused - partly because I felt the reason he gave for wanting to be picked up was not genuine and partly because I just can't cope with this anymore. I'm also on my own (divorced), and studying for a uni degree. In the past I have gone through a lot of trouble to get him referred to CAMHS or other services, and then he wouldn't engage at all... And then another referral to a psychologist through a pediatrician.. Just when I had given up, he got another referral to CAMHS through school (his 3rd or 4th I think) and seems be a *little* bit more engaged with the process this time round. During lockdown he 'self-diagnosed'  as transgender and ADHD (influenced by internet groups) but I am not entirely convinced (not of transgender or ADHD in general, just in this specific case) and think his 'real' issue is autism. Oh, and mine probably too (undiagnosed). It does run in families...