Tuesday, 1 June 2010

The Truth About Autism

Inspired by my friend and fellow autism-mum, Amelia Critchlow's post of the same title, I've finally got up the courage to tell it like it really is.

Regular readers will know that I like to call it honestly anyway, but recently autism and everything that goes with it has been threatening to engulf me- it won't - but here's why.

The odd looks and comments we get when we go out- especially if Lyla lashes out - I can honestly say don't bother me. I've developed an incredibly thick skin and ability to stare very hard at nosy people.

The stuff that's more challenging is what goes on behind closed doors.

Firstly the emotional ache, which is always there. I try to focus on the things Lyla CAN do rather than what she can't. And when I do this, I am often surprised. Last week she appeared in a fashion show at school and managed to walk down the catwalk in a cast of over 100. Go Lyla! Also, she's the only child in the school to have so little awareness of social graces that when asked in her homework what she thought of the book, just writes 'Boring' and when asked who she thought would like it, writes the name of the author! Or, in the supermarket yesterday shouts out 'If this aisle was full of Paris cheese, it would turn my oxygen to vomit'!!!!

Amidst all these successes and quirkiness, there has also been the challenge of her rampaging through the family home. This weekend she washed all the windows with suntan cream, smashed a vintage chandelier, hid my husband's guitar tuner (the replacement for one she had hidden previously) cut up the sofa and autographed it in violet permanent marker, emptied the whole contents of the freezer out and left them to melt on the kitchen floor, hidden a pile of peas and apples under the sofa, poured fizzy water into toilet wipes box, flooded the bathroom (I'm crossing my fingers for the Victorian cornicing, its holding up so far, I hope it survives, albeit, now dyed a lovely shade of parchment). She also left her favourite outfit in the garden and the foxes got it, keyed cross shapes into my car (I now look like a weird Satanist/ Christian Evangelist driving along, as if I don't have enough to worry about), refusing to wear her seatbelt (and I mean physically REFUSING) and ricocheting around the car.

This is all I can remember for now, but it's enough to be going on with. Don't get me wrong, I don't care about the destruction of my property. Well, I do, but I'm past caring. But I physically can't keep up with clearing up after every incident and do everything else I need to aswell.

And everything else, in autism terms doesn't just mean the other domestic stuff. It means the whole raft of 'strategies' and 'treatments' and 'therapies' that I have to try and implement in order to try and help improve the outcome for Lyla.

I spend a lot of the week at appointments with various professionals, training sessions, reading up and preparing things (visual timetables etc) for Lyla. I sometimes feel like I have a Phd in autism. And still I often feel it's as elusive and unknowable as ever.

To demonstrate, I'll list a few of the therapies that I have either considered or actively DO with Lyla, ranging from the essential to the completely wacky:

Occupational Therapy- proprioceptive training exercises, 20 minutes daily
The Listening Programme- sensory integration therapy, 15 minutes daily
Speech Therapy- ongoing programme of how I speak to Lyla and play games with her to encourage social interaction
Drug Therapy- Melatonin prescribed for sleep by the paediatrician
Nutritional- Fish oils and certain vitamins may help autism
Behavioural Strategies- constantly
Intensive Interaction Therapy
Applied Behavioural Analysis
Son Rise Programme
Biomedical Intervention
Berard Auditory Training
Music Therapy
Gut Analysis (!)
Hyperbaric Oxygen Therapy
Gluten-Free/ Casein-Free Diets
Social Stories
Visual Aids & Timetables
Play Therapy
Verbal Behaviour
Scotson Method

Lyla is being assessed for ADHD at the moment, so that's another extra layer to deal with.

She's also pretty behind at school because she finds it really hard to concentrate - I try and help her to catch up, but she usually refuses to read or write for me. Everything comes second to her obsession with television, which she watches with the sound cranked up, sat right in front of it, bouncing on a FitBall. It takes over the living room and it's just not worth the fight most times to get her to put it on something I like or even better, to turn it off.

As far as these therapies go, there's always more you could do and there's always the knawing doubt that unless you're flat out doing everything you can- which you can see from the list above would probably take several lifetimes- then you're not doing enough. It feels like a bottomless pit. But I want to do as much as I can and no matter how many times people say that you can only do what you can, I never feel like I'm doing enough, I should/ could be doing more. I want to give her the best chance.

The main point with all these therapies is that you have to do it all yourself. For example, the government will pay for you to have an initial assessment with an Occupational Therapist, but not the therapy itself, so you have to carry out the therapy yourself. Some of the other therapies are only available privately and inevitably some of the provider's try and cash in on people's desperation. I have a friend who has bankrupted herself by paying more than £50,000 on therapies for her son over the last two years.

Doing nothing isn't an alternative for most families, the autistic behaviour needs to be strategically managed, otherwise you end up with having to call the police because you have a strapping 16 year old child who has just beaten you up. Of course, you may implement the behaviour strategies and still have this happen. But you have to try.

So far this morning, she has punched me, screamed at me and lashed out at her sister- this is all part of her impulsive behaviour and her difficulty with managing strong emotions. Nevertheless, these actions leave more than a physical scar.

Additionally, we popped into the supermarket for five ingredients to bake a cake with.....she then got told off by a huge pair of security guards for touching the travelator. I explained that she had autism, because I felt I had no choice. She got really upset because I had told the man she had autism and because she doesn't understand being told off. She cried all the way home and said never wants to go back there again. I felt I hadn't handled it as well as I should, I wish people were more aware of autism- our lives would be just a little easier. I contacted Sainsbury's and asked what their policy was on making the store accessible to people with hidden disabilities like autism. They were very helpful and said they would send a note to all the stores to make them aware of the issue. I've made a decision that when I can, I'll raise the issue rather than suffer in silence as the only people that hurts is us. I told Lyla about the phone call and she said thankyou and then- 'well, the man was an idiot mum, he didn't know anything about autism, he should be sacked'- Go Lyla!!!

It's hard not to feel that all this is more than a full-time job. It is several full-time jobs. Certainly, most nights, I put them to bed feeling absolutely shell-shocked. I lie there and stare, poleaxed, so tired I could vomit, a deadweight, oblivious to all sound, just breathing. And before she started taking sleep medication, this would be just the beginning of an evening full of hyperactivity and violent behaviour.

Then I get up and start all over again.

This is extreme parenting, although nowhere near as severe as what some other families living with the condition have to deal with. I know of mothers who survive on 3 hours sleep every night (from 10pm- 1am every day) because they have a child who can't sleep, even on medication.

I'm starting to get several minor stress-related health complaints like stomach ulcers. I sometimes wonder if I will last the course as I don't see how this level of stress is sustainable in the long run. As families we need help. I need help - a fairy godmother or failing that somebody, anybody is welcome! People wrongly assume there must be help out there for us. There isn't. We have to help ourselves. The story of one of the parents on the TV programme Young Autistic and Stagestruck comes to mind. Her son was rampaging around the house, so she took him out in the car, where he attacked her. She came home and called emergency services and said somebody had to help her or she would take herself and her son and jump off a bridge. This is heartbreakingly wrong. We should and could be doing more, so much more, for families living with autism.

So this is the reason for our Living with Autism artshow- to allow the participants to share something important to them and the raise awareness of our lives.

We exist.


  1. thanks for the link. Gosh, this is just something else isn't it Rachel? I always tell myself it could be worse, but that doesn't really matter if we are physically suffering the effects of parenting so extremely. I went to bed last night so exhausted I told C I felt like I was drowning - that is honestly how tired I felt!!!!

    I know I will get there in the end, I just HAVE to believe that otherwise it seems to bleak. Believe it too if you possibly can.

    Good on you for phoning Sainsbury's - we will campaign for greater awareness and it will happen. x

    Stay strong, there are more projects to come . . . . :)


  2. Gosh, what can I say?! You're one tough cookie my friend, I cannot even imagine how I would cope... I'd probably die of shock. And I do agree that increased awareness would help us all. There's an autistic child amongst my relatives and, dare I say this, I am a little scared. I considered myself lucky for not having to visit but the truth is... I wouldn't know how on earth to behave or even what to do. Thus I think that informing people a little more, a little better and a little more often, would help all of us, but first of all those of us who live with autism daily.

    You're in my thoughts and hope to meet you soon (hopefully when I'll also meet Amelia!). All love!

  3. Hi Rachel, first of all - apologies to both you and Amelia for not making it into town last week - I was sleepwalking and too tired for words. You know how it is, as this post proves in spades. My son is 4 in August so his problems haven't really unfolded yet, we don't know what will happen, and that's one of the things that I find terribly wearing - just the dead, flat feeling about the future and knowing that it's not going to be OK, probably. But that said - when I hear things like Lyla writing "boring" about her book and that only the author would like it then I just have to say thank God for the Autists, they are so bloody brilliant aren't they? They do see things are they truly are in some ways. What can I see? Thinking of you and sending all good we're-in-this-together, you-are-not-alone vibes your way - even if I can't keep awake to visit you in the evenings. Fx

  4. What can I say, not see - sorry x

  5. Thanks so much for your really brave and honest account of what it is like living with Lyla. My little boy is just being referred for a full assessment and I bogged about it just Sunday, so finding lots of links to sites about parents dealing with ASD is really useful for me. They think my lad might have Aspergers, we will see. He will still be my gorgeous boy whatver they might say. Thanks again, Mich x

  6. Just found your blog recently, whilst still not really coping with my son's diagnosis of Asperger's 12 months ago. He also has problems with violent behaviour, and so it really help reading about what other people are doing, and how they manage. Thanks!

  7. So much in there and so much I want to say but all I can do is say 'I get it, I know exactly what you mean'. The tiredness, the stress, the feeling like we should be doing more then it gets to extremes of exhaustion, tummy pains and depression. I would love to be able to say something nice, sweet and hopeful right now, but I can't. I guess all we can do is keep telling people how hard it can be and hope that someone listens and gives us help. Jen.

  8. Thanks for all the supportive comments- it's good to know that we're not alone, that in itself means something. I feel like I exist in the normal world and then in this completely alien universe too, that only those who have been there can understand.

    I hesitated about writing this because I've been feeling low and this is not a blog post as such, but rather a regurgitation of feelings- it felt good to get them out though and then press Publish!

    @Steph- thanks for you comment- it'll be lovely to all get together :)

    @Fran we will meet, despite sleepwalking!...maybe we should try for a daytime?

    @Michelle Good luck with your assessment :)

    @Looking for Blue Sky- just commented on your blog, it will get better:)

    @Jen- thanks as always:)...it's good to know that we're all out there rooting for eachother in the blogiverse!!


  9. Hi Rachel
    What can i say? Just a cheer from me for you for writing this important post. I was watching that documentary series Young, Autistic and Stagestruck too and the part I remember most was when Molly had locked herself in the loo and her Mum was outside trying to coax her out. When Molly's Mum broke down with exhaustion, also saying that she didn't want Molly to see her crying, that moment made it so visable, just what a parent of a child with Autism or indeed any disabilities is carrying around with her/him.
    I am coming to London next week and will find time to come to the exhibition in Putney. As you say there is so little help for parents - ADHD and Autistic children often don't "meet the criteria" for support/respite etc do they? What you are doing is creating a community of support out there, and this is in between all this that you are doing on a daily basis. Just awesome Rachel! x

  10. We do indeed exist. This is a very good post and should be read by many parents of typical children too. Ignorance will never go away but being thick skinned and able to ignore it will get us through in any situation. I'd say Lyla is doing very well, she clearly has her own mind and her own thoughts of which have much potential. And something we must never forget is how much our autistic children bring us incredible rewards; and that will never go away either. Lucky, aren't we.

    CJ xx

  11. @Jan Thanks so much for taking the time out to visit our exhibiton, I'd love to know your thoughts......Funny you mentioned Molly from YASS as she was the child I thought was very like Lyla- such a good programme :)

    @CJ Thanks Kathryn- you're very right about our kids, we do have access to a 'special' and unique universe and to wonderful special people. I hope the world can learn to care for them in the way that we do :)



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