TBH - coming clean about that autism *taboo*

Before the Storm - when Puberty came to town..


I've been meaning to write about my son’s current phase of behaviour for quite a while. But I guess I was waiting until the storm had passed, that we had found a way to resolve it, and I could write an uplifting post full of practical advice and solutions.

But something else has prompted me to come clean and talk about what we are going through. I had a conversation with someone yesterday where I was asked what I thought of an event on the weekend, and in a moment of weakness I answered:

"To Be Honest, for us it was as much about the night off in a hotel, our son has been very difficult lately and we needed the respite.

and this person reprimanded me firmly saying "Oh I would never typify my son in that language"

I was shocked, and replied "I'm not being negative about my son, but he can be so challenging at times and it is exhausting.

She went on to say something about knowing its hard, but it is hard for all of us and not to think of myself as a victim. (I'm paraphrasing, but it is hard to hear through a red mist of shock)
A Victim? FFS!

I mean:

FFS!

I have kept this quiet for so long. I love my son, I ADORE my son and admire him for all his lovely quirks and his intelligence and his charm. But I am sorry, he has AUTISM and since becoming a teenager he has developed anxiety which manifests itself in controlling behaviour.

We haven't been able to talk to each other at home for 3 years. That's right. If me and my husband try to have a conversation Liam interrupts it.

I hate even typing this because it sounds like we live in one of those miserable autism households where everything is hopeless. And we Don't. WE SO DON'T!!

We are proactively trying to manage this stage - and the experts tell us it is a stage that will pass when puberty is over. We have the behaviourists monitoring it, our lovely family Psychiatrist has observed it and recommended medication and made a referral for respite.

We assessed the level of control he had over the entire household and then changed all our rooms around to try and manage it environmentally. Liam was occupying the open plan attic as his "bedroom" and the Living room as his "den" where he controlled the TV, Sky box, DVD player while playing on his computer and iPad - all at the same time.

So Liam got moved into our bedroom. I left all the DVDs in the attic, and he has a DVD/Video player in his new bedroom. His computer is now in the kitchen - where all teenagers’ computers should be.

The Living room is now Our Bedroom.

Yep, we are like the house in "Charlie and the Chocolate Factory" where the grandparents all sleep in the living room. Well, actually, we were able to move some couches into part of our kitchen and make that the "living area" but yes, our bed now sits in what should be a living room.

My son took all this change surprisingly well. He calls our new room the "Hotel Bedroom" and he is right, because we still have a couch (and a fire place) but he no longer *owns* it. I think he kind of likes the new bedroom on the second floor. He likes being able to close the door! (ahem)

We are coping, but it is stressful and you need to keep your head straight.

And that was what was so upsetting about that reprimand I got from that person yesterday. I was being judged by a standard they had set for themselves and in doing so they were implying that we should NEVER talk about the negative aspects of autism.

I love and cherish my son. But this behaviour can get very tiring.

I didn't choose this situation. I'm trying to be strong, to find the good in life. To wake up on a cold clear day and be glad it is not raining. To have a cuddle, a giggle and a RAR! with my not very verbal girl. To go to all the charity shops in the city and buy videos, then eat sushi with my giant of a boy who I adore.

So please do not tell me not to admit to enjoying a bit of respite when I can.

I agree, that we communicators have a responsibility not to reduce autism to its lowest common denominator in blogs, documentaries, interviews and newspaper articles. Because if you do talk about the worst day, there might be someone out there who has just had a diagnosis and is despairing at the idea that *every* day will be like your worst day.

But there are also many people out there who are having the bad days like you, and need to feel they are not alone in it.

I try and inspire, I share the positives but today I am coming clean and sharing the Taboo.

xx

Comments

Thanks for sharing this, it will help so many others to not feel so alone, I hope it helps you too xx
Momx3 said…
Thank you for sharing. Your story is so familiar .
Can I ask, was that lady an autism parent? I would find it hard to believe she actually knew what she was talking about. I have nothing but admiration for you & Mr D. You guys are an inspiration to us all. You are the most pro active autie parents I've ever met.
& yes you do deserve "a rest" in whatever way you can get it, xxx
Love Vicki
Lisa, it is so important to be real about the lives we have. Sure we can rave about the good times because it is uplifting and keeps us going. However, people also need to know the shit that we have to deal with. I am hating the whole puberty issue and I think my new motto is going to be FFS..... for today anyway! Thanks for sharing.
Anonymous said…
Oh Gawd! I could almost have written this myself at the moment. Button is in the beginning stages of puberty and his anxiety is already spiralling out of control. We are in "damage limitation" mode at the moment. Some people just don't want to hear the truth, because it would mean they might have to DO something. If they believe we are all grand, living the dream, then it gets them off the hook. Thank you for this - just knowing that we are not the only ones going through it really helps.
Taz xxxxxx
Gracie said…
ThankYou for sharing :) we ride the waves of anxiety here also and it's building by the day.

And as for yer wan in her ugly judgy pants ......fuck you missus :p
navajo said…
hey, that took guts and I'm sure a lot of time to compose. It is an important piece for all us parents with children on the spectrum. I've witnessed lack of understanding parent to parent because of an unwilllingness to see that it is a spectrum and each child is not like a perceived notion based on what goes on inside 'your home, your head'. Really grateful you've posted and share. Lor x
K.Line said…
It's so important to talk about the phases of parenting - even the taboo ones. And, at this point, were I you, I'd be moving to Tahiti! :-) I mean, my kid's just a pre-teen pain in the ass and I want to move to Tahiti.

My experience of teenage physical aggression is limited, but I will say that my kid was physically aggressive as a younger child (she had a VERY low frustration threshold) and would break things (when locked in her room on a time out) or hit me. She was also verbally aggressive at these times. Her pediatrician said it was in the spectrum of "normal childhood behaviour" - albeit on one side of the bell curve but I was convinced she was possessed by Satan on occasion. It was incredibly hard and she was small (though strangely strong). I can't even imagine managing this with a grown-sized boy.

So you have all of my love and support. I know you will manage through this as a family. And when it's done, I hope you get some fantastic present to commemorate your strength.
K.Line said…
One other thing... My daughter, as mentioned, does not have autism but she is incredibly hormonal at the moment and sometimes she goes seemingly, utterly insane. I mean, it's bizarre (but not shocking since I did live with her then-shocking childhood frustration intolerance). My point is, these pubescent teens really are out of control. It's hard to remember that they're being overtaken by weird hormones, but it's true. So hopefully, you can take comfort in knowing puberty can't last forever. That's what I'm trying to do!
adrienne said…
hi lisa

I went through this with my son too. To be honest it has not really gone away either. But after years and years of it, he knows that he cannot control everything, and he has to remove himself from the room now if I am talking to those he feels threatened by.

I used to have to ask him to ask his brother something, and get his brother to give him the answer to give back to me. Such was the meltdown if me and his brother were talking and he couldn't understand our conversation. It was a complete fking nightmare for years, and it caused havoc with family relationships.

Every stage of autism has its own challanges, but for me, this has been one of the worst phases I ever had to survive.

So fck anyone who judges you. They need to walk an hour in your shoes, and they would soon shut up.

Keep going girl, your doing a great job xxx
Chereen said…
Lisa, it took so much for to write this piece & we have to talk as parents. When we say it out loud it 'hurts' as its our child we talking about But keeping it inside is a lot worse.
All autism mammies need support from each other & I believe it what's us through the days that are really tough.
Someone out there is going through the same thing or has come out the other end & please god they can chat to you.
Autism is so hard but the one thing we all Love is our children x
Deb said…
I found your post via Blue Sky's blog just want to say thankyou for sharing your experiences. Sometimes I feel like there is too much pressure to share the good times because to talk about the not so good times is seen as a slur on autism. The truth is that there are the difficult moments and I think it is important to share them so people understand the realities of parenting autistic children and find support. As for me, I recognise a lot of what you say. My autisic son has hit puberty and it is tough. His anxiety and controlling behaviour has worsened and its seriously limiting our family life. So reading your post and the comments on here has reasured me that I'm not alone.
Anonymous said…
Love love love it Lisa x
never ever ever give up!

there are always choices, always options... looks like you guys are making good ones!

Chat soon, A
Nifferdoodle said…
Well done for your honesty, Lisa. You have a right to feel how you feel and you were brave for voicing your feelings, here and to that lady in person. We all have days where we would be delighted to have a break from our children, and that has nothing to do with disability, though many of us don't have a clue what you are going through.
On another note, Rob is strong enough to move your telly. You just let me know if you need him. He's freakishly strong. :)
Andra Johnston said…
Very brave of you to come clean and talk about this, for a lot of people you are a inspiration in the world of Autism parenting as a positive person but you have also just validated a lot of people's experience of what you are going through now and that is also inspirational, you have grabbed the bull by the horns and admitted that things are bloody hard for you right now. Don't mind that narrow minded twit over the respite, jesus you and other parents who have kids with autism just are relieved most days to go to the toilet without having someone hanging off your leg or having a meltdown at the door. Grab every bit of respite you get and don't let anyone ever make you feel like that again.
Anonymous said…
Going through this "phase" at the moment and he is only 12.There is a lot I have learnt from what you have written and for that I thank you.I found a course called Phase 3 very helpful on how to deal with the hitting.I was in shock at how many others were in the same situation on the course.Nobody wants to talk about it for fear of their parenting or handling of the situation being judged.My son has started overnight respite and it so helpful to the other children.I am still struggling with worrying about him while he is away but it is getting easier.I hope the respite goes well in the future.Thanks again for writing this.
Lisamaree Dom said…
I have been so heartened and uplifted by the support you have all demonstrated with your comments and the private messages, tweets and facebook shares that I have received since putting up this post. I thank you so much.

On Tuesday night I felt like I could not cope with another day of this. Not only did I have Liam playing up, but every time he did, not only was I dealing with my fear, I had that nagging voice in my head suggesting I was "playing the victim" while I was standing outside Liam's door trying to calm him down - well it was awful. You have to feel confident to see through behavioural management procedures. A lack of certainty can make a kid like Liam even more anxious as he wonders how far he can go.
Much wine and a disruptive night's sleep followed and when Liam woke us all up early on Wednesday, then promptly fell asleep on the couch beside me (big baby that he is) I covered him up with a blanket and used the time to write this blog.

By writing it down like I had taken some of my power back from that person, and with each Facebook share, and email notification of comments, my confidence grew. I'm not alone in this, there are a lot of other people who feel this way. I am so grateful for every message, every kind word, the showing of your own vulnerability to support me in mine.

Thank you all of you. xx
Patrick McHale said…
You are brave beyond battle hardened soldiers. A wonderful mum and wife. I am sure your words have found the grain with so many parents of hormonal/autistic teens. Hope you get your well deserved night of sybaritic relaxation at a nice hotel.

Mac
Clive said…
Lisa, I am so mad at that woman! How dare she and even more so if she is a special needs Mom!!

What you wrote was brillant in response and I hope it helped you a little and also helped you forget that stupid woman and her stupid comment!

You rock as a Mom!! Don't ever forget it!!

ps-Bill is a pretty awesome Dad too!!
Me said…
I am so sorry you are dealing with this. You are an amazing mum LisaMaree. xx

Regarding the woman who told you off. Fuck her! Seriously. She can fuck right off.

Take care x
Anonymous said…
I feel for you. You put into words our life for the last several years. My son is 9. As you can well imagine, I am not looking forward to puberty. I wish you well and hope this is over sooner rather than later.
DQ said…
I can only say thank you. It is extremely hard to be this honest about such a challenging, painful aspect of life. My son is 8 and a half and we are seeing an increase in aggression, all related to anxiety and control. Your post has been very helpful, mostly to let me know I am not alone in feeling that it is difficult to be honest about the ugly aspects of autism (especially in regards to puberty).
So, THANK YOU for writing this.
Jennifer Bush said…
There is nothing wrong with needing a break, with admitting it is hard, with stating the truth. My son is only five, and gets so frustrated with his inability to communicate that he often gets aggressive. He doesn't know what else to do. And the constant guessing at his needs, avoiding the biting/hitting/kicking is exhausting. I can't imagine what will happen when he's big.

Thank you for sharing, and I'm glad I've found your blog.
Thank you so much for writing this. So much of what you've written are challenges we've faced over the years (though my son is only 7), and there is something very powerful and important in reading how others have been through the same experiences. The message of your post, about feeling safe to speak out our lived truths, is a really important and much misunderstood one. I think you made the point really well. Excellent post.
Erin said…
Thank you for sharing. I hope THAT woman reads this. We all have to know we're not alone, whatever tough bits of life we're facing. x
jazzygal said…
Well, good for you in sharing your story. No-one has the right to tell us how we should talk about our kids/situations. If it was an Autism parent who said this then THEY need to be reminded that 'if you know one child with Autism....' and the presentations change as the child gets older.

I am sorry to hear that things are so difficult for you all, and for Liam, right now. I hope writing this all down helps too.

By sharing this you continue to be an inspiration....

xx Jazzy
Alison Wells said…
Yes, thank you. Having had our house trashed today and recently been in the firing line of aggression & fearing for our safety we can be at our wits end and wonder what we can do. At age 12 our son's hormones are definitely coming into play but it's been similar for a couple of years. Thanks for mentioning too some resources I wasn't aware of. I know how this can destroy family life and your own sanity and I am horrified by that woman's comments. Hoping you find a way through and wishing all of us in a similar situation strength and help.
Jo said…
You are the LEAST victimish person I have EVER read. You said something that was simple and true, and I have no idea how anyone can strike that down as 'typifying'. I guess that reaction speaks volumes about that person's own attempts to suppress their internal conflicts rather than be truthful about them. Whoever they were - fuck 'em.
Penny said…
Wow! This is a brilliantly written post. So honest and real. I love it!
Nan P. said…
If anybody needs a break, it is you Lisa.

I am reading this as I ponder on the budget cut to the Respite Grant, and I feel so so very angry!

Sending you Nana's hugs. I wish I could do more...
Nick McGivney said…
Unstressed Lisa would brush off that ridiculous expectation from someone who doesn't know what she's judging. And hopefully very soon unstressed Lisa will get to breathe out and in easily. Really tough now, obviously, but even writing this, in your unique and unapologetic way, is probably doing a ton of good for others who might beat themselves up over ridiculous guilt. Living takes up enough time without all that. Jesus, we need respite from the neurotypicals in our house. This is that moment in the airplane safety drill when they say 'Attend to your own lifejacket first.' And the bit they don't say is 'because if you're dead you're fuck all use to your kids, aren't you?'
Anonymous said…
Lisa, I am a teaher and have also nannied for many children with autism and cannot actually believe that woman's nerve. The mums of the children I know have often told me (not in front of the kids)how unbelieveably difficult they have been - one woman said if she could do it all again she wouldn't. No chance.
I have seen the fights, tantrums, even shitting in the corner of the living room and I know that keeping calm is incredibly difficult.
One boy had all the aggressive behaviour that your son is displaying but at a much earlier age. I used to want to KILL him when he beat the crap out of his younger sister. I HAVE NO IDEA how his parents coped.
Anyway, the thing that surprises me the most isn't that woman's comment, but your strength, attitude and spirit. You deserve another award my dear.
X Lillian
Dixie Redmond said…
Thank you. I feel less alone now. I was starting to feel like I was the only person who had missed the Unicorn Express. I came via TPGA's FB page vto Deanne Shoyer's post which linked to here.
Lisamaree Dom said…
Dixie, I missed the fricken unicorn express too. I had no idea that Deanne had linked on that post as I have been too busy living the autism thing to want to read about anyone else's views.

I am very cognisant of the views of Autistic Self Advocates when I share the negatives of parenting. But I was lucky enough to be-friend, via this blog a young man with autism in Northern NSW. Together we explored our perspectives of autism. He was very empathetic for his own mother, as he remembered feeling and behaving a bit like my Liam. And I learned a lot about why Liam would want to act out with such explosive force.

This young man is now at university and too busy most of the time to be conversing with an old Mom like me. But I hope that one day, I can have a similar conversation with my own son, and learn why he felt the way he did when a teen, and why it might have upset and frightened me.

Liam can always be sure of my love. I will do anything to be connected to him, we are so alike! but when his rages threaten his sister, then I have to make hard decisions.

We are lucky enough to be getting some help at the moment and I am counting the good days (2 so far)

I wish that to all parents in my situation. All of you.

xx
Enie Dub said…
Found your blog through the Journal. Really enjoyed reading it and just wanted to say how admirable you and your husband are.
neelavigo said…
What a rough time you are having! Really people have a nerve commenting on ANYONE else trying to cope with a tough situation. She can't have know you at all or she would have seen that a lot of your life is spent rejoicing in the people your children are and encouraging the authorities to give them the resources to be the people they can be - not typifying them (not really sure what the heck that is supposed to mean anyway). Keep your chin up, A
Thank you for writing this. I am at the very beginning stages of this journey (my 2 and a half year old was just diagnosed with moderate classic ASD). I am a long way from dealing with puberty and a boy so big I cannot control him but it's very likely that when that time does come, I will also be dealing with similar issues at times from my own son. It does none of us "newbies" to the ASD mommy club any good to have the situation constantly sugar coated. We can greatly benefit and learn from the experiences of those parents going through this before us and maybe even find from your experience ways to diffuse our situations so they aren't as hard. I applaud and appreciate you.
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Lisamaree Dom said…
Dear Muhammad Ibraheem, Of all the comments of support and empathy yours gave me the most joy. I would love a car like a helicopter. Please send me one now. Thankyou xx
Anonymous said…
Hi Lisa, I am not one to comment on blogs usually and I haven't read through all the comments but there is a few things that came to mind whilst reading this entry.
I remember when my gorgeous boy was younger. Most of the time he was perfection, in his very own unique way. A gentle gentle child. At around the age of 6.5 something changed, well much changed. Mostly it was reactionary to the anxiety of school, profound sensory issues, serious bullying issues, dysgraphia and dyspraxia frustrations, speech issues and well as most Autism parents know it goes on. His aggression wasn't person and often self harm was a bigger concern, the running away and going missing etc. at the age of 8 or 9 it escallated and he began hitting me, the meltdowns so extreme, the things I had understood came undone. I had years of natural therapies training and had managed to teach myself endless techniques but these ceased to work. I read an article about the blocked or lack of functioning in neuroreceptors in Hormones in Autism. So the hormones flood through unregulated at speeds often 10 times more than the non autistic person. They begin earlier in Autism too, the worst ages begin from 6 and often slow and regulate a little better around 10 or 13 depending on the child. Which is also the time the child is recognising their difference in the world. But mostly when they are wanting to express and process input that has been learned in early development. My son expressed it to me as frightening because in the snap of a second he felt fine and suddenly he was fuelled with emotions, anger and energy with no reasoning, his sensory processes instantaneously went into over drive and meltdown with no time to regulate or find ways to calm as he had learned to manage before this time. He hated it and carried tremendous guilt over the aggression. He also described the files in his brain freezing like a computer and he was often not always baled to remember what happened during these explosions, which also scared him. I learnt so much about his depth when he expressed this so beautifully, if only it was earlier rather than near the end of the worst of it. And I had the benefit of his communication which so many other parents don't. And this was a blessing. After reading the article I researched more and more, sadly there is little information around about this time and the whys, or research into the hormone processing but I did find lots of useful things. For us the things that worked best was zinc and magnesium with homeopathic chamomile a. Calming and hormonal regulators. I had to watch closely for the look that said explosion imminent. I got it wrong more than right for a while. I tried the medication road but he had an allergic reaction to the meds and almost died. Worst month of our lives.
Anonymous said…
Pt 2. Sorry for the long post and perhaps it's no help, I when I have shared this it has helped some parents and not others. On the note of sharing. It's tough, admitting that is not lack of love or weakness, it's being honest. We can not support and help each other nor learn if we feign roses and joy all the time. I learned a great deal from the mothers who walked before me with honestly and insight, and continue to learn. I am now going through round two with a 4 yr old girl with aspergers and its so different. I call her little miss lungs, she can scream for 12 hours, her restless legs and sensory issues mean she sometimes bites herself till she bleeds, leaving the house can mean screaming down places we go, it becomes too hard to go anywhere. Both my kids are considered high functioning but I still had years with both where the isolation and issues be it sensory or anxiety and OCD have left me isolated and house bound. And a single parent with no respite or support. I personally felt like it would be ok because other people admitted it was hard. There is no victim in that. There is no person in my house that is a victim. My children have acceptance, love and understanding, they know they are neurological diverse and use this as an empowerment rather than being disempowered. At the end of the day, you know the how's and whys of your own life, there is no competition and no need for judgement, it is what it is and somedays it's a beautiful road to be on and others its like walking miles on Lego with cold feet

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