Dear Blue Moon,

I am so sorry to read about what you are going through. It is so stressful for your own family.
Upon reading your story I can see some similarities with other school refusers, my son included.
Remember, you are not alone. There are many others going through what you are going through.

I can see that finding the right help is not going to be straight foward and I cannot offer a miracle cure, but I can offer you help, from my own experience, on how to make the situation more manageable.
Firstly though, have you been in touch with the group that used to be called Parent Partnership...I think the link is in the resource section on this site. They can offer advice and support, especially for parents of kids with ASD.

School is not everything if not attended for awhile or in the same manner as other children. The main thing is to find ways to re build your daughter's self esteem. She most likely just has a feeling about school that is like a fear that you and I can only begin to imagine. My son used to yell and fight. He still tends to avoid going to bed so that morning doesn't come so soon or he is too tired, and that is then an excuse. But he claims he does not know he is doing it, and is not doing it on purpose. So we can only assume it is in their subconscious and it is this that tends to drive them. One half says...I'll try going...and the other half says 'no way' and that wins over. Try accepting that school isn't going to happen right now and try and do some activities that your daughter used to like that will make her feel better about herself. She will not go to school feeling this bad and we cannot nor should not, physically force them.
Talk to your doctor about possible medication that might take the edge of your daughter's distress. Tell your daughter it is ti make her feel better, not make her able to go to school, or else she won't take it!
My son is now on medication that makes him feel much better. He still lacks motivation due to so many years of this. I think if 'school' had been dropped out of the equation long ago, my son at 17 would not have so little motivation to attend and pass.
He mostly tries to attend, and so this is the medication that has helped. And he will pass it seems, as they have been flexible and allowed him to finish off work at home. Your daughter's school should be doing this too. They are legally bound to provide work for any child unable to attend school due to illness, and this is an illness, despite the aspergers, it is a mental health issue.
So it takes a bit of pushing the school to make this happen and in some cases they should provide tutors.
If your daughter can keep up with just maths and English at this stage, she at least won't fall behind.

As for your work situation. It is difficult. I cannot suggest anything to help that but if you are able to follow through with any of the above, you might find it does get easier.

Does your daughter have any friends? If she does, can she stay in touch in line perhaps? Not having friends makes it harder but sometime even having friend doesn't make it easier to attend.

The main thing is to embrace your daughter where she is now and acknowledge her pain and fear. Don't see it as misbehaviour or withdraw things as any punishment. This will backfire as many on th forum have observed.

The other issues with cleanliness are probably part aspergers and part anxiety/mental health. My son has the opposite, which can be equally problamatic, over washing hands, having to change sheets far too often...going through to many towels...
And this was from a boy who used to scream and yell if I washed his hair and for years never wanted to go near a hairdresser!
I think some kids are diagnosed with ASD when they have a mental health issue and sometimes vice versa. I do not believe my son has ASD or Aspergers but does have a mental health issue and things like bright lights and loud noises (cinemas were a nightmare) are now ok. Schools are not built for our kind of kids....so we either make do with part school...attend when they can....or we find other ways or other schools or medication to take th edge off.

Sorry my post is so long! I get carried away trying to think how to help and not sure how helpful I have been.
To sum up...stop forcing the school...do activities that are fun at home to build self esteem....fight only one battle at a time....find some kind of enticement for the teeth cleaning...and find some support for yourselves. It is a very stressful time for you and you do need support to stay strong.
Do come back and tell us how you are coping though...there is usually someone around to listen and there might be others who can offer better advice than I can. It will eventually get easier and there will be steps forward, no matter how small.
Meanwhile, take care
Linda

Hi Blue Moon. So sorry you are in this position. I have 2 children both with ASD. My son is 21 and now at university. Something we never thought possible. He attended a boarding school for children with ASD and SpLD. If we hadn't fought the LEA for that he would have become a school refuser.

My d is 15 and has ASD and BDD. Unfortunately for her we didn't go for a statement of SEN as she seemed to cope. Things have now fallen apart and she is often not in school. I have taken redundancy to cope as even if she gets to school she often ends up coming home early. We are now applying for an EHC plan. My d also has sensory integration disorder. Have you tried letting your d use a soft flannel to clean her teeth? We tried that with the least minty toothpaste and eventually our D managed a baby soft tooth brush.

Where are you in the U.K.? There is a great school in Surrey for girls up to 16 with ASD. We met some of their girls at a conference for Women with ASD. They spoke so passionately about how the school had changed their lives. They wrote a book called M is for autism. Unfortunately the name of the school escapes me but look on utube or Amazon.

I don't have the answers as I am struggling with this myself. With my son I learned that mainstream isn't always the best way. I chose a school where he felt that he wasn't different. Most if not all were quirky and intelligent. He needed small classes and a caring environment. Not something a large state or even private school could offer .

Good luck

I'm an adult with ASD/Asperger syndrome. The other commenters' suggestions are good and would have been helpful to me as a child exhibiting very similar behavior. I have a few comments about what may be going on in your daughter's head.

First, you mentioned briefly that she is "in denial." I can certainly understand that. Society is full of subtle negative messages about people with ASD, and nobody wants to think that they have something they've been subconsciously taught to think is bad. Maybe you could demonstrate to her that there are people with ASD out there who are respected in society and have happy, productive, fulfilling lives. John Elder Robison, for example, has Asperger syndrome and has made quite the name for himself writing about his experiences with it. (Incidentally, I would also highly recommend that you find a copy of Robison's book Look Me in the Eye. It's a memoir about his childhood with Asperger syndrome and might give you some insight into what your daughter is feeling.)

You mention that she won't tell you about what bothers her. I wonder if she is not just refusing, but unable to tell you. Many people with ASD find it difficult to verbalize when emotionally overloaded, which obviously might happen when she has to talk about things that upset her. You also say that she makes aggressive nonverbal noises when you try to get her out of bed, which further makes me think she may be having trouble with verbal communication at these times. Could you try to get her to write, maybe in a letter to her Mum, about her fears? My mom and I used to communicate via written notes when I was younger and it was really helpful in terms of getting her to understand me. Whatever she tells you, be sure to take it seriously and don't brush it off as a minor thing. Remember, you may not understand her feelings, but they are very real for her.

In regards to her being bullied--unfortunately this is kind of a self-perpetuating cycle for a lot of ASD kids. Most of us end up being somewhat anxious about other people because we don't understand their social behavior, and they don't understand our attempts to socialize. The anxiety leads us to miss social events, which leads to even more social anxiety, which leads to further social isolation, etc. Linda suggested that maybe she could talk to her friends online, and I think that might be a good way to ease her back into a social environment. You want to be very careful about who she talks to, of course, but online communication is often less stressful for those of us with ASD, especially text-based communication.

Parents and even teachers aren't always aware of any bullying that goes on either. I was horribly bullied for several months and my parents had no idea. Since she isn't regularly attending school this probably isn't happening right now, but if she has attended school normally in the past, might she have been bullied then? It may even be another student still at the school that she's afraid of. On this front, all I can suggest is that you reassure her that if she tells you what scares her about school, you will believe her. It didn't occur to me when it was happening to tell my parents because my teachers didn't believe me about it, so why would they?

The pacing/imaginary pony riding is probably a form of stimming, which is one way that people with sensory processing disorder deal with it. Essentially we are trying to control our sensory environment by creating sensory input for ourselves that blocks out the external, unwanted stimulus. I wonder if this might have something to do with her school problems--if she finds it difficult to sit in a chair even for a few hours at a time. Could she be periodically allowed to get up and move around while at school? Even just a minute or two every hour might help to calm her down.

I think your daughter may be suffering from depression in addition to ASD, given the semi-suicidal comments. Unfortunately this is very common too, in fact I remember expressing suicidal thoughts at exactly the same age as your daughter. She needs mental health care from someone familiar with ASD, but I understand that may be a problem if she refuses to cooperate. All I can suggest is that you stress to her as much as possible that therapy is not a punishment and does not mean she is "crazy" or broken, but that you and the therapist just want to help her be less afraid. Also, be tolerant if she can be convinced to go but won't talk much for the first few sessions. Any amount of progress is good.

Medication is a good idea. I understand it may not feel great to give your kid pills so that they can cope with life, but sometimes it's the only way to get started on the path to healing. I was put on Prozac as a child, but there are more effective medications with fewer side effects available now. Do keep a close eye on her behavior if you go this route, as people with ASD have "paradoxical" reactions to medication more often than the general population (i.e. instead of the intended effect, the opposite happens). Our brains don't always function in the same way as most people's do.

Finally, a minor thing, but one that might help: I had similar tooth-brushing issues, and my mother was told by a dentist to just go without the toothpaste if I would brush my teeth without it. Toothpaste does help, but just a good scrub with a wet toothbrush is still better for the teeth than doing nothing. Try to get her a small toothbrush with the softest bristles possible, maybe even a baby toothbrush. You might also remind her that if she doesn't brush her teeth she may get a cavity and have to go to the dentist anyway. Don't threaten her with the dentist, just present that fact as neutrally as possible and let her mull it over herself. She may decide that small, controlled periods of discomfort are preferable to a long, horrible experience getting a tooth drilled.

Hope this helps. Obviously you are in a difficult situation here and I feel for you and your children. Being a kid with ASD in a world designed for neurotypical people is never easy, and neither is parenting such a child. If it gives you any hope, your daughter's issues may improve naturally with time--mine did and I am now a perfectly functional, if slightly weird adult.

HI Avery

What a lovely post - from someone who truly understands. I think everything you have explained in your post is most helpful to us, even if our kid hasn't been diagnosed with Aspergers. Many anxiety symptoms overlap.
I think your point about letting the daughter know that you 'believe' in them is just so vital. I also found this with my son early on and embraced him where he was at the time and knew he was feeling some pretty awful things and I was infuriated when teachers would tell me it was just bad behaviour!

Probably these days there should be more understanding of anyone with ASD. Perhaps we will see a change in more years to come. Sometimes some teachers think they understand ASD but then label a child who is showing similar symptoms as misbehaving. We shouldn'thave to go around with a label on our head. It is about accepting and embracing everyone - no matter what they act like or what they look like or what philosophy they follow.
In our better understanding of mental health disorders and also issues of ASD, we seem to have slipped off the edge of where it all should start - tolerance. We must teach tolerance to children.


I also think that teachers need to go back to teaching to'Mixed abilities' and extend that to 'and mixed personalities'. Different students also learn in different ways - so we need more understanding of those who visualise, those who verbalise and those who need lists and borders etc. WE need to stop trying to make everyone the same! There seems to be a lot of focus about making kids more confident - so they try to throw everyone under the spotlight!
And as for giving talks...why force kids to talk to 25 of their peers when they probably will never ever do this again in their lives! It makes those who are already confident shine and bloom and those who are anxious, scuttle for cover and feel absolutely terrible about themselves. My son is very knowledgeable but I don't think there has ever been a time when he wanted to get up and talk to his class about it!

Anxiety seems to go hand in hand with depression as the frustration must be enormous. I do not believe my son does have ASD but as he has social anxiety - then many of the situations overlap. The avoidance then becomes the norm and that is hard to shake. I am sure you would identify with this. It does become a way of life then - which is what we are dealing with at the moment. How do you turn the constant negatives from the past into positives and motivation for the future?
Your advice re medication is good. I also came to believe it was the best way to take those steps forward. Without it, my son was just going no-where and getting more and more depressed. He still has a lot to work through but he is not suffering the depression he was so things do get easier.
It is so refreshing to hear your story and to know that you can get through -despite the odds and perhaps once school is behind you - life does become easier.
Thank you so much for sharing - and I am sure the others who posted on here about their ASD children will find comfort and good advice from your post.
All the best in whatever path life has now led you...
Linda