Struggling mum of undiagnosed Aspergers daughter

Hello,

Hope you are well, i think maybe if  you start a new thread you’ll get more replies.  I was told that I could find a private paediatrician by a GP and he said look at BUPA but  I haven’t organised anything Yet and I don’t know if this is the correct advice he gave me.  There are very knowledgeable people on here but they might not see this thread .... good luck and all re best. 

Hi I’m not sure if I’ve hit on the right bit to get this message seen but my son is going through the referral process now but it’s been a struggle to get over parties to fill in the forms, is there a private testing service that’s recognised by the NHS? My son has a lot of sensory issues and is anxious and I just don’t think he can wait six months to be seen, thanks for any advice

oh babe, you need to have something for you as well. this is tough. . . can you join a support group or find a therapist so you can just offload onto them? they might help you to keep the control. it sounds like you're not a terrible mum, you're in a hard situation.

Hi... As an autistic daughter reflecting back on my own teenage years I can identify with what you are saying. I had no idea I was autistic at the time and neither did my family. I was really horrible to my mum, I was on high alert all the time, I became distent, would not speak to her and when I did it was really horrible. I rejected every kindness she showed me because I felt it was a demand. I knew none of this at the time and now I feel a real sense of guilt and loss for what could have been a very different relationship with my mum. She continued to show consistent care and kindness which I am so grateful for now but it most have been really really tough for her. 

My relationship with my dad was easier and that was because we simply spent time together doing things that helped me to calm...(like repetitive DIY tasks) we didn't talk much and he placed little demand on me in terms of conversation but through simply being with him and in a calm state our relationship strengthened.

I am no expert and we all live such different lives but if there is a calm place you can find together even if it is just reading books in the same space, baking or doing crafts working on your own things but simply being together when you both can feel a sense of peace then do this as much as is possible. Like I say I am no expert and certainly not qualified to give advice but I know this worked for me.

I hope this helps. 

You're welcome. Give me a shout anytime for support, advice, venting etc! 

Hi NAS6427 thank you for your Kind words and Support

Mum on a mission :) said:

I know I need to be managing this and taking control and being the strong grown up but I cannot cope with it at the minute and i need some support but don’t know where to get it ?  I really need some help. 

In terms of having support by way of information ~ there is a book called The Complete Guide to Asperger's Syndrome, by Tony Attwood, which costs nearly £20 new, or is free by the following pdf link:

http://www.autismforthvalley.co.uk/files/5314/4595/7798/Attwood-Tony-The-Complete-Guide-to-Aspergers-Syndrome.pdf

Going through puberty for any AS person will be tough. Struggling to understand the rules of teenage life and dealing with their hormones is bad enough for 'normies'.

Just a side note about why secondary school is where things really kick off.

You go from being able to play in juniors ( even if you have no friends , you can still play)  to having to behave like an adult: walking about, talking and gossiping with other people. That can be boring, confusing, stressful and when you add social grouping to it, it is like a whole new world of trauma to navigate. Unstructured free time is really challenging. 

Then add sexuality issues, harder work in class, teachers knowing little to nothing about autistic girls and you have a recipe for disaster. If you don't have an EHCP yet, it's worse. 

We often start restricting diet or binge eating  especially sugary things for comfort, and that leads to more mood swings. 

Because you are naive, you get taken advantage of a lot and bullied for being different. Normal kids can shake off bullying more than us, and they can distinguish between intent and non intent far more. We are either oblivious or take everything much harder. 

It is just relentless and traumatic being an autistic teenager, and you cannot escape one single minute of your own head, so bear that in mind whenever you see the outcome of that exploding in the home. 

Bond with her over her interests and spend as much time together as possible. If she tells you her problems, acknowledge them, be empathetic but DO NOT say you understand because you don't, you can't, and that will annoy her; if you can help, then help, if not, just be there while she vents. Venting is very important and a lot of people don't get that. It is often the way to get out negativity so we don't explode physically.  After that, distract her with her interests and try to have a positive day. 

Walking the tightrope between being protective and involved but trying to stay objective, and being too protective and involved and not being able to be objective is nigh on impossible. You're damned if you do, and your damed if you don't, but all you can do is try! 

Mum on a mission :) said:

She hasn’t discussed in detail but she has said some of her friends like boys or girls and she isn’t interested in Boys or girls.

She will feel increasingly apart from her peer group if this is the case, although she is still very young (especially emotionally, if she is autistic).

I'm 37 and have only just discovered the term 'asexual', which describes me perfectly, but around 70% of people with autism identify as non-heterosexual, so it's really not as unusual as it may appear. I do wish someone had told me about other sexual identities as a teenager but these things were far less mainstream back then; it would have prevented a lot of hurt and sexual trauma as a result of going through the motions, trying to be like everyone else.

Honestly, though, I don't know at what age the average person becomes aware of their sexuality, but 12 sounds quite young to me. Many of them may just be copying what older siblings, cousins etc. are saying to sound grown up, which is a ridiculous concept to anyone who is autistic i.e. saying something that is not a fact in order to create an artificial bond with people who would otherwise leave you alone.

I am so very sorry to hear how badly this is affecting you and your family. I can see a lot of my own behaviour in what you describe at your daughter's age, and your relationship with her sounds eerily familiar. 

She's only being this cruel to you because you are the centre of her universe—as my mum was for me—and she's beyond frustrated with the world and with herself, and has no way to understand or express it. For all my intelligence, I had neither the emotional vocabulary nor self-awareness, and your daughter is probably in a similar situation.

I think the combo of moving up from primary to secondary school (with massively increased social interaction and sensory bombardment) together with hormones at that age make it really toxic for undiagnosed young people with autism and their families. With so much chaos around her all day at school, and so much internal chaos too, she will be feeling constantly overloaded with zero means of escape. (At least you were able to stay in your bedroom all afternoon for some respite; she has nowhere to go to escape herself.) I know it's unbearably challenging, but please take some small comfort in the fact that you are on the medical radar.

My older brother is neurotypical, exceptionally intelligent, healthy and outgoing; and I was the problem child, always "overreacting", "flying off the handle", "exaggerating", "being too clingy" or "ruining it for everyone". Honestly, my poor parents, and brother. I monopolised everything and still it was never enough. (My Asperger's wasn't diagnosed until I was 30, with my endometriosis diagnosed aged 25.) I see now that it left my brother without much parental support throughout his childhood and teens, and quashed all intimacy between my parents, although they somehow stayed together. It's taken my brother having kids of his own for us to really bond again as a family.

As an adult, I can honestly say the thing that makes the biggest difference to my mood and behaviour is sugar (although avoiding gluten and dairy has eliminated all the stomach problems, and recurrent ENT/sinus infections). Since cutting out all forms of sugar and almost all carbohydrates, I'm on a much more even keel emotionally. It's not fool-proof, but I'd say it reduces my volatility by around 80%. When I do 'cheat' and have something sweet/carbs-based, I recognise that I am going to feel really irritable and be prone to lashing out at the people I love and/or more susceptible to sensory overload and meltdowns, and as such I have to make a concerted effort to mask that, or take myself away from everyone until the sugar-crash is over.

As others have said here, if you are able to identify some patterns in your daughter's behaviour and start spotting the triggers, you may be able to prevent some of the nastiness, or at least know that it is coming and distance yourself emotionally from it. Remember, it is the autism that's doing this, not her. I know it's hard to separate the two, especially in the heat of the moment, but she won't be able to separate the two in her mind so it's especially important that you do and, in time, help her to as well.

Really good luck to you all. You will always find empathy and support on these forums, whether you have specific questions or just need to have a completely justified rant. Take good care. Xx

Does she have any close relatives who can chat to her - people she likes & respects that can explain to her that what she's doing is self-destructive.

Also, how chaotic is home life?    For her to be able to function better, try to make home life as simple, calm and predictable as possible - the least sudden distractions and random events the better, simple routines, no "Because I say so" type of interactions.

Just a little word of support, Tilly, it can be so much harder with boys in terms of aggression due to their testosterone; meltdowns can be more violent which is scary, stressful and exhausting, so I feel for you and him. Keep trying to show him love, acceptance and flexibility. He will appreciate it even if he doesn't show it. Remember meltdowns are losses of control, not tantrums. Meet his needs and they will lessen. 

There will always be triggers but make your home the safe place and he will trust you more. The more pain he experiences from others, the more transference will occur, especially to siblings. 

Boys struggle more socially in that they don't learn how to mask as well as girls, or at all sometimes, so teach him how to socialise well, but don't push it when he can't. It is a long, long process that requires commitment and hard work. I find the SIMS game excellent for that, but you can use anything. The key is persistence and positivity. Use any occasion to teach, keep it simple and fun. 

Mainstream is rarely suitable for ASD kids, any specialist ones near you? Depending on your son, maybe residential specialist school may help? But be aware he may see that as abandonment dependant on his understanding of himself and the situation. 

I hope that helps a bit, but I have been there, done that, and bought the tshirt, so give me a shout for any advice or info you want! 

Good luck! 

Difficult and challenging are our middle names. Also stubborn. Be prepared for her to reject help and fight every thing and every person until she reaches her own conclusion that she needs help. Only then will you have her co operation. Take every day as it comes and don't start a day with the last day in mind as it will have a negative impact. Once a kid ( non autistic or autistic) sees that you see them as the "difficult one" they will fulfill that role and you make no progress. 

Remember: autistic NOT difficult. Different not worse. 

Good luck! 

I can relate to all of that. Between my kid and I we have it all covered! The contradictions are also typical, which makes it hard for others to understand. We know it's perfectly possible to have contradictions, but the normal world doesnt understand. You must be this or this, you can't be both, feel both, do both, etc 

Sounds like standard meltdowns and the self harm is also typical. All standard female ASD stuff. 

Heartbreaking I know, but this is how it goes. Think of it as she is normal for an autistic girl, with mental health issues,  that way you wont be thinking it's strange, unique to you and that are are alone with it. 

Unfortunately the smarter you are, the worse it is as a kid. 

The best thing you can do is educate yourself until you are an expert in ASD, OCD, etc and then deal with each thing as it comes. Most of all, don't be afraid, it's scary for all of you but you will get through it. 

Is she under CAMHS yet? 

I forgot to say that high functioning autistic minds are like adults mixed with toddlers and so it causes a lot of confusion why we can do one thing but not the other thing if that makes sense. You're never really the age that you are, either older or younger which is why other people get frustrated, confused and often angry. Plus you often have co ordination issues, balance issues, stomach issues. Basic ally a lot of issues that others don't understand or believe to be true. 

Hello and (hug) thank you so much.  Our lovely daughter is 12 with siblings 9 and 14. The issues my daughter has are to do with OCD, and being over hygienic, strictness and control of a routine, not happy with change, struggles with social situations, sleep issues for which  she has now been prescribed circadian/melatonin.  She mimics me constantly, eg if I dont pronounce my words properly she gives me dirty looks comments on my appearance and picks up on everything I say or do or what I’m wearing. She’s highly articulate and pretty clever and can twist situations quite cleverly.  She’s okay academically doing okay in mainstream school but not great with friendship building / Keeping. Once a child upsets her or doesn’t act as she feels is okay they are struck off completely.  Lots of her anxieties are around school / homework / teachers. She also has self injurious behaviours that she demonstrates very openly when she’s anxious or unhappy or wants her own way.  For example (thankfully nothing too bad at the moment) , pulling hair, throwing  self to floor, poking into her eyes and digging nails into her arms/ legs, Punching herself or scratching her face.  She’s obsessed with her looks and fashion.  She has a very high opinion and also a low opinion of herself which I don’t understand. She’s said to me she knows she’s different and that she feels ready for a test on that so she can find out.  She hasn’t discussed in detail but she has said some of her friends like boys or girls and she isn’t interested in Boys or girls.  

I do think there is so much going on for children in our society I really feel for her but also I find her very difficult and challenging. 

I hear you! It can break relationships pretty quickly!  Even the strongest families can crumble. Stay honest, stay committed and above all, try to have fun times in between, because that will save you. I know it's impossible a lot of the time. 

No, not me, my teen has just been taken. 8 weeks ago. Pain like you can't imagine, but at this point maybe needed. Time will tell. Social services involved from 12 onwards after school refusal and path that follows. I asked for help. I shouldn't have. I don't want to slate SS as maybe someone has had a good experience, but in mine they have destroyed our lives. 5 different social workers, 3 CAMHS workers etc. 

The answer to your question is, yes, it does get harder as you get older and as she gets older. Just wait till she's having periods if not already! Other kids get older and grow their independence, but that doesn't happen with us, we stay younger and can not meet the same expectations. Often we regress due to anxiety. 

But you can help by not expecting anything too much, praising and supporting every achievement, allowing some challenge but being mindful that if she can't  do it, that's ok. Kindness, patience, positivity is key. 

We have an unrivalled ability to be  negative, to let hurt and anger over take and to get lost in our own suffering. Be aware that a comment that may seem like nothing can fester inside for days, weeks, months, years. It's not intentional, it's inevitable because unlike most normal people every day is hard and stressful unless in our comfort zones and enjoying our special interests. Plus, we are often hypersensitive which will make every experience magnified. Others can be hypersensitive and they are the opposite, unable to feel certain things. Either way, everything is dramatic. Think teenager plus 100! 

Like I say, I've been that kid and at 38 with my own one i  am still no different inside. You don't out grow any of it, you learn to manage and keep people who help and accept you close. But autistic girls tend to cling to their mum more and see them as their best friend. If they think that bond is not strong enough, that they are rejected ( even if all you want is some time alone) that can cause upset. This is where "out of the blue" behaviour comes in. 

I hope some of this is helpful! 

Sounds like my mother and I growing up. Unlike you, she had no clue and I was chucked out at 17. 

First of all, well done for doing what you're doing. It's hard,  and unless you are autistic as well, you're going to make many mistakes; that's inevitable unfortunately, so don't be too hard on yourself. Also, do not take most of what is said or done personally. You may be the only person she can be herself with and that means you get everything. If she has a meltdown, that's not a tantrum, that's a loss of control which is scary and draining and trust me, she doesn't want to be doing it. Don't blame her, forgive her and if it's a situation you can help with, do that. The most important thing is to show you care no matter what she says or does. You're the rock that you can't kick out of the ground. Try to deescalate triggers that you can see coming and whatever ones you can't see coming, just be there for the fallout. 

The most important thing is figuring out what behaviour she can control and what she can't and work with that in mind. Normal people can often control behaviour and acting out is manipulative, whether conscious or subconscious, which is why people will talk to you about boundaries and things being acceptable or not. Trust me, if you push autistic people to their limit discipline wise, they break. Flexibility, acceptance and tolerance are the key. When she knows you are strong, stable, and there whatever, I think your relationship may improve. 

Autistic minds do not work the way non autistic minds do. We do not have tantrums, we have meltdowns and in extreme stress, shutdowns ( where your mind shuts down your body completly) in these situations, we hate ourselves which fuels the negativity, but because it is not in our control no matter how strong minded we are, we also feel weak, powerless. 

Control is the number one priority in autistic minds. It is a need for control that prompts all behaviour, needs and wants. Not control for a bad purpose, control for our safety. Once you understand that, you can help. 

Second to control is sensory needs. What you need and what you can't handle. 

After that it is understanding. Understanding what we see, hear and feel; understanding of others, and finally, ost importantly, being understood ourselves. 

If any of those are threatened, undermined or dismissed you have a situation on your hands. 

And lastly, you must understand that aggression is almost always transference. What she experiences from others, you will get in turn as her closest relative. 

Is there dad around? If so, how is he coping? 

Thanks for your reply, what can I do as a reality check ? She’s 12.  But she feels like a giant. I’m scared where it’s all going and I am worried about her mental health and my own well being too.  We have grandparents but they are not visitors or helpers and have no idea of how our home life is.  May see them Easter / Christmas may see them for a birthday most likely won’t see them.  If I explained they wouldn’t help or understand x