It’s been bad. It’s heavy. Bring on whatever it has to be, I can take it, but please don’t let my daughter suffer. There is nothing worse than watching your children go through the hell of despair.
Today I wanted to write a light-hearted post about the birds visiting my garden, about my cats, about the lovely rain and the sunshine, but I cannot. The words evade me. I am lost inside a murky shadowland, staggering about looking for some kind of light, any kind of light.
My daughter suffers, entrapped in a world of isolation, hopelessness and yes, rage, that only someone with Aspergers can understand. I am her mother and I think I understand, but I don’t, not really, though Lord above, how I try.
I try to explain to people what it really means for her to have Aspergers. Yes, she went to school, gained a handful of reasonable GCSEs (although failing maths because we now know that she also has dyscalculia, the numbers form of dyslexia, but this was never picked up during her school years) and by no small miracle she gained her BTEC in Art & Design at our local sixth-form college. She used to be able to catch the bus, go to the cinema with her then-boyfriend and meet up with other friends now and then.
But behind closed doors, I witnessed the horrendous toll that every day life was taking on her. The mental torture that she was put through every she time she did those things and the toll this took on her physically. Each day it became harder and harder and she coped less and less. In the mornings I would awake to find notes which she had pinned up on her bedroom door, letters written to me begging me not to send her to school. Day in, day out, then weeks, months and years.
She was besieged by a mental anguish that seemed to suck the very life out of her. I witnessed it every day. Nobody knew what to do. I made numerous calls to the school, took her to the doctor, talked to her teachers. Nobody listened.
Then, one day, when she was 18, it all just collapsed and she simply was not able to do these things any longer.
A counsellor blamed it on me and her father for getting divorced. My daughter was furious. It took one year of repeatedly trying to get a referral from our GP before we were taken seriously and at last she got her referral which set her on the path towards receiving the correct diagnosis.
Why didn’t my daughter ever raise her hand in class every single one of her teachers wanted to know. Why didn’t she participate, or join any after-school clubs, or take part in sports? Yet not one teacher from Kindergarten to high school ever raised any concerns that she might need professional intervention. Instead, they labelled her as shy.
When she was little she would go to parties and even sleepovers sometimes but I would see the abject relief on her little face when she was back home again, safe and secure within the comfort and familiarity of her home and family.
When she attended pre-school two mornings a week from the age of four I worried slightly when she seemed always to be alone in the corner of the room when I would go and pick her up. All the other children were playing happily, laughing, holding hands and going home together on play dates. But my daughter was obsessed with a plastic sandwich and told me she was happy playing alone with it. I quietly expressed my slight concerns to the teacher but she laughed it off, telling me that my daughter was ‘a delight’ and that everything was ‘perfectly fine’.
Once, when she was seven years old and in second grade, my daughter’s class performed a song for their parents. The children sat outside on bleachers in rows singing their hearts out and my daughter sat the end of her row, two of her friends the other side of her. At the end of the song the children had to hug each other, it being all about friendship. Her two friends hugged each other and my daughter was left along to hug herself. I watched this and the pain couldn’t have been any worse if somebody had stuck a red-hot knife in my chest.
I hated those girls at that moment for what they did. My own sense of rejection exploded in my brain and I was devastated but my daughter seemed not bothered by it. I don’t think she even noticed.
She told me once that when she was in Kindergarten a boy, seeing she was alone in the playground, came over to ask her to play with him. She told him to ‘scram’ because she didn’t want to play with him at that precise moment and she was quite happy as she was. So much for being shy.
She had friends, however, and she was a good friend back Other children seemed to gravitate towards her when she was little and I’ve come to learn that this is quite common, but as ‘Aspies’ grow up it becomes much harder for them to make friends. I noticed that other children often took advantage of her and left her out of things. A host of misunderstood difficulties with communication and social interaction escalated, bringing with them their partners in crime – rejection, isolation and then the crushing loneliness.
Talking recently with my daughter about those awful school days I learnt for the first time the extent of what it was really like for her. I asked her why none of her teachers had ever shown any concern for her or alerted us to the fact that just maybe she needed some help.
She told me that because she was never violent or ‘acted up’ she fell far below the radar. She told me that she and another friend had frequently ‘cut class’ by hiding out in the toilets. “Didn’t any of the teachers ever notice?” I asked, shocked. I was certainly never once called about any of this. I was horrified to learn that my daughter could have been anywhere and nobody knew about it.
Her answer? “It was because I was invisible.“
She wants to be like other people, she wants to go out and do the same things that her peers can. She is enraged that she cannot. She will celebrate her 21st birthday this year, yet she feels that there is no hope for her ever living a normal life. She feels that she has missed out on numerous opportunities, that life is leaving her behind. The rage and anger at the injustice of all this is one of the biggest challenges for people with Asperger’s.
When she was at long last diagnosed two years ago I thought ‘Halleluia’ , now we can get her the proper, professional support and help. It has not been that simple. For two years since her diagnosis I have fought and fought to get her the proper assessments.
My daughter has since become completely socially avoidant. If something causes you immense pain and anxiety then you avoid it, right?
In my search for ways to better explain just what this is like, I came across this Goodreads quote by Dr Shana Nichols taken from Liane Holliday Willey’s book, ‘Safety Skills for Asperger Women: How to Save a Perfectly Good Female Life‘*:
“Females with ASDs often develop ‘coping mechanisms’ that can cover up the intrinsic difficulties they experience. They may mimic their peers, watch from the sidelines, use their intellect to figure out the best ways to remain undetected, and they will study, practice, and learn appropriate approaches to social situations. Sounds easy enough, but in fact these strategies take a lot of work and can more often than not lead to exhaustion, withdrawal, anxiety, selective mutism, and depression. -Dr. Shana Nichols”
Our journey takes us down a path overgrown with sharp brambles and briars with thorns which pierce and cut us. We trample on them and cut them down with our bare hands as we push our way through, bleeding and broken, but they keep growing back, ensnaring us and pulling us back down to the ground. Yet I am confident that somewhere beneath all this there lies a new path, a clear path, a way out of the shadowland. I will not give up.
Take my hand my daughter, I will never leave your side. Together, and with God’s strength and guidance, we will find your way.
Then hush, there it is! Through the fog of this shadowland I catch a glimpse of my little girl. I am waiting in the car in the church car park one warm evening as I see her come skipping out from her Awana’s class, smiling from ear to ear as she catches sight of me waving to her. Her plaited hair dancing behind her as she runs over to me, her little froggie bible bag swinging from her hand. She is 8 years old and she is free and happy and completely innocent of the troubles to come. This is what I remember, forever imprinted on my heart.
You are not invisible any longer, my darling girl.
Want to know what Asperger’s looks like? It looks like this –
My daughter
(c) copyright Sherri Matthews 2013
*Safety Skills for Asperger Women: How to Save a Perfectly Good Female Life -Liane Holliday Willey, Jessica Kingsely Publications, £11.69 Amazon
“I see people with Asperger’s syndrome as a bright thread in the rich tapestry of life” – Dr Tony Attwood
A View From My Summerhouse 
POWERFUL !!
A deep, complex, full throttle post that tells it like it is.
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It’s how it is, you are so right, it is indeed very complex. x
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Gorgeous. I can see her skipping toward you. I hope you see it again soon.
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Yes, wouldn’t that be great…thanks so much Jennifer 🙂
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Bitter …sweet …people are their own norms!
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So very true…
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A wonderful heart felt expression of love and frustration. We can’t help but feel your pain and hope. She is a beautiful person.
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Thank you so much mvshulze, you are very kind. I just had to write this today, get it ‘out there’ and share what is on my heart.
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What a beautiful post, Sherri!
I cannot imagine how hard it must be to witness what your daughter is going through. Hopefully, her life will get easier with time.
Thanks for sharing!
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…and thank you Kristin for your lovely comment! I hope that I will be able to write about my daughter’s positive progress as we journey through this. There are good days and bad days and today I just had to share what was bubbling over.
I hope things are going well with you and your precious little guy 🙂
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It is a hard and rocky road and your dear daughter is very blessed to have such a mother who will fight tooth and nail for her freedom. Only a parent can feel the pain of their child, as they feel it. Your fight will not be in vain. One day there will be a way through. Never despair. Love you xxx
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As always, your supportive comments mean so much. Thank you xxx
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Wonderful post Sherri..!!Thanks for sharing..!! I wish you all the best in everything..!!
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Hi Red Fox! Lovely to see you here and thank you so much for your kind words! I do really appreciate it 🙂
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Hi Sherri!
Had to post..I just read this & I know you must be feeling like crap. My mum’s the same she tells me she finds it hard to understand me. Recently I decided to confide in my mum & tell her how I feel sometimes with the anger etc & it’s a relief. Sometimes just talking about how her mind works may help. Like ask her what it feels like in everyday life. I think a lot of us females with Aspergers at this age tend to be silent about it & kind of accept it as this is how our life is going to be.
Reading about her school life is similar to mine. I took my GCSE’s etc. I was really shy in little school. My teachers were worried and would ask my parents all the time to get me to a doctor & my dad (having aspergers too) got defensive saying it’s fine to be shy.
Anyway I was shy up until I started secondary school (high school) after a few years I started letting my anger out. I had to put up with racism in school in little school which would result in my trying to strangle or wind the person. My dad taught me self defense growing up & now I know why. He knew I would have some sort of trouble. I was never bullied or picked on because I hid as much as the aspies behind closed doors. The only people that would comment would be my friends that were confused why I was ‘anti social’ or rude etc. But luckily in my secondary school we could get a pass at lunch times and go home which I did all the time. I never stepped foot in the canteen hall. I hated it.
I find Aspergers is not properly understood really. It’s quite sad that people also have high expectations of it. They expect us to look or act weird. They don’t know that there are 1 women to 9 men that have Aspergers & women can hide it better. That quote you posted I have saved on my phone. It means so much cause it’s so true. I feel like I’m constantly fighting and proving to people who I am which hurts.
The only advice I would give you is to talk talk talk! get as much of an understanding as you can. You sound very calm and non judgemental which helps! My mum is foreign & her culture don’t know much about autism so she only has the experience of me & dad to go by.
Another thing with Aspergers is we are all different. Not every Aspie is the same or likes the same things etc. Like I loved maths but wasn’t in the top sets or anything. I love solving anything. I read a book once called Digital Fortress I think it was that one anyway about cryptic codes etc & wanted to work in that area. But I’m not obsessed with it if you get my drift? It’s hard to explain but you already are willing to know as much as you can which is the best way to be!
Your daughter is beautiful too! I’m sure in years to come things will slowly change. Time doesn’t really exist in my world but I am aware of it. There is so much I want to do but have no idea how to! GRRR!
I hope you feel better soon you know where I am 🙂
xx
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Ahh Maria, what a beautiful, heartfelt response you give here. I do see so much of what my daughter is experiencing written here, but I do also see great hope and encouragement in your words.
Thank you so much for sharing here so truthfully, you are a gem 🙂 That is why I wanted to post my daughter’s photo to show that having Asperger’s doesn’t ‘look’ like anything and so, as you say, people don’t understand it when she doesn’t act a certain way and was also branded as ‘anti-social and rude’ by her friends. She did experience some bullying in secondary school when we moved from the USA to the UK. Comments were made about her being ‘American’ and this enraged her.
Yes, thank you for sharing the ratio of Asperger females to men and I’m so glad that the quote I used has been helpful to you. When I came across it I thought, “great, this explains so much!”.
Things are better since I wrote this post, we are winning through, bit by bit. Bad days and good days.
Bless you and yes, I do know where you are – see you there 🙂 x
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so many painful moments for both you and your daughter…but i can tell you: just the fact that you want to understand what she experiences is huge. that alone will make such a big difference, even though it may not allieviate the pain she feels at the moment. my parents never really wanted to know what was happening with me…they just wanted me to hurry up and get “normal”. i know this sounds cliche, but things can get better…and i think they will get better just because you’re making an effort to understand her and find the support she needs. my thoughts are with you guys.
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Thank you so much for reading this post and sharing your personal experience here, I really appreciate your insight and your encouragement also! I do sometimes wonder if I can really help my daughter in my lowest moments and it certainly isn’t easy! I hope that you are finding the support and help that you need. I am going to visit your site now to find out more about you!
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the low points will happen, but just know that having someone on your side…someone who is making an effort to understand…can make such a huge difference, even though that doesn’t make the situation any less complicated. you’re on your daughters side… a lot of people out there wouldn’t do that, their goal would be to pressure their kids into some kind of normalcy act, which can do so much more harm than good. it may not seem like it at all times, but your support and love will be invaluable.
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Well, I can’t say enough how much this means for you to share this here with me. Some days I just feel I am alienated from my daughter, that she hardly wants to speak to me. I know it is because she is struggling at those times. As a parent, I can understand the need (often propelled by fear and lack of understanding) to pressure our ‘aspie’ children into acting as ‘normal’ but we do need to give the message that we love our kids no matter what, even if they don’t conform, or dress how we think they should, or shut themselves away in their room or have obsessive behaviour patterns. When all this is stripped away, however, I am truly comforted by your words of assurance. Bless you and thank you so much. Please keep in touch 🙂
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A very moving, beautiful post… you and your lovely daughter are very lucky to have each other. Hopefully, both of your lives will get easier with time.
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Thank you so much for your lovely comment and kind words of support. I am heartened to read that this post moved you in this way, written as it was from my heart 🙂
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Sherri…. We have walked such similar paths…. I love this post…. I love your spirit….. and I love your daughter’s heart……… and now….. I’m reblogging this amazing post. Thank you Seventh.
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Ahh, bless you and thank you so much Seventh. I was deeply moved and encouraged by your blog and will be following and reading avidly. Reading all that you described in your post about the ‘invisibility’ of females with Asperger’s I just felt that so strongly that I wanted to share this with you. I’m so glad I did, and thank you so much for the reblog. I hope that your readers are helped in some way by it.
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I’m sure it will help others Sherri…. thank you for your generosity of spirit 🙂
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Reblogged this on seventhvoice and commented:
No Longer Invisible Darling Girl….. a beautifully written expression of what it’s really like to walk the pathway toward diagnosis……
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beautiful yet heart wrenching. I am so glad you shared this.
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Thank you so much aspergirlz for reading this, and for your beautiful, kind words.
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Wonderful post ..hoping for the best for your daughter and you!
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Thanks so much Beth…means a lot that 🙂
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I just read this, Sherri. I found you after this was written, through your post or guest blog on Jill W’s Summer Series. I don’t know why I missed going backwards, but your letter to me, your sweet words made me come back and read this.
First of all, I am so sorry no teacher along the way understood what was happening to your daughter’s life. Especially these days, lack of friends and social interactions would raise ‘red flags.’ I came from general elementary school teaching background into the lovely and special area of preschool in 1999. Unfortunately, I was 45 credits into my Master’s degree, working all day in the preschool, working four nights a week at Cracker Barrel to pay $19,000 using my tip money to pay for my coursework, when the 2008 deadline came up for “No Child Left Behind.” This legality act had many teachers in their 50’s who had professional licenses in another area of teaching: when they had promised we would not need to get our Master’s degree to move over into special education. Well, I “lost” my hand painted walls of a house we built from the ground up, my ex-husband chose to lose his job, not ‘doing what the establishment’ was asking him to do as a comptroller at a nursing home. My youngest child and I moved into a one bedroom apt., I ‘saved’ my car from repossession and I pay high college rates for the Parent Plus loans we accrued. (Loans based on my teaching salary and my ex handling the nursing home finances which he gave up for unemployment. The reason I bring this up at all is to say, I did not finish my degree and so am not teaching anymore but work at a warehouse. It just leads you from one place in my life to another, is all.)
Meanwhile, I learned so much about the wonderful variations of children out there!
I have seen changes for the ‘better,’ some for the ‘worse,’ in the area of Asperger’s Syndrome. Have you read one of my posts on Asperger’s? I wrote one about a man whose son found interest in life through watching Disney movies. The young man ‘teaches’ others on a campus, about the movies having in each one, a ‘special’ animal or character who stands out as ‘different.’ This major newscaster wrote a great book about how his son became social through his process of analyzing Disney (and even has a girlfriend.) If you push the cursor on Asperger’s in my list of categories, this should lead you to it.
I am so glad your daughter finds joy in art. It is a great media to work out your emotions. I am not sure this would be a good movie for her to watch, but did you ever watch “Temple Grandin?” It is an amazing movie on animal slaughterhouses, not a ‘pretty’ subject but Temple is a real person has a doctorate and came to the Academy Awards with the actress who portrayed her. She became famous because she liked to watch patterns made by cows in a field so she came up with constructive and “humane” paths for cattle to enter the slaughterhouse.
I am just brainstorming about what areas your daughter could meet other people who have been ‘invisible,’ too. Also, ways to make her life valuable and meaningful in the area of art… Wish I lived closer, she might like to hang out with my grandchildren, who love to meet different people. At a water park, a “lower functioning” young woman with autism was whirling in circles, towering over my little toddlers’ and elementary school grandies. I mentioned while they ate a snack, “Maybe she might like you to turn slowly around and near her?” Micah, age 5, decided to try this. She started to hum and smile at him. She also turned faster. I did not wish him to slip and fall so I went up to him and told him, “Wave at her and go slow; if you turn slowly you won’t fall.” (He is the only one of six grandchildren who has had stitches under my care… smiles! Due to an accident in my apartment, chin hit edge of the coffee table playing flashlight hide ‘n seek.)
After you read all of this, you may wish to delete it, Sherri. May not be of use or help, just expressing support and hope for you and your daughter! I figured it would not ‘jam up this post’s comments’ for awhile until you read this and edit it out. Hugs, Robin
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Dearest Robin, I will not delete or edit your beautiful letter, for that is what it is. I am deeply moved and I thank you from the bottom of my heart for all you share with me, in such honesty and trust. I can relate so much to a great deal of what you share here and I am so sorry for all you have had to deal with, I share with your the loss and the pain. But we are survivors, of that there is no doubt, and we have done the best we can with what we have been given…and as I said in my previous reply to you, we are blessed beyond measure in our beautiful children.
I will definitely be over to read your writing about Asperger’s and other subjects as soon as I can, I look forward to it very much.
My daughter is high functioning and very intelligent but is assailed with anxiety and all that goes with it. But I have every faith that we shall win through and she will find her way in life. As her mum, I just want her to be safe and happy 🙂
God bless you my friend…and again, I do appreciate all you share with me. I am so glad to have meet you here 🙂 Have a beautiful weekend and I’ll be over to you very soon ❤
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I hope you can tell I am not one who gets to things right away, Sherri. I just read this five days after you wrote this lovely reply. I (by no means) did not mean the focus to be on the loss of my professional life, just to share that I did enjoy 9 years with the little ones. I am so glad your daughter is highly functioning, which I appreciate her interest in art and also, how life can make her ‘anxious,’ too.
I am like you in so many ways, although not the same challenges. I appreciate how you ‘go the distance’ and really help and enhance your daughter’s life. I was throwing out suggestions, which it is hard since I don’t know her. I am blessed and you are, two friends coming together to share some things.
Do not worry about getting to my posts, I am sure you know a lot more on the subject, beyond what studies I chose.
Oh, just to say that one child in our classroom had Cerebral Palsy, we chose (my team while writing his IEP- individualized education plan- to add what the Physical Therapist thought would be a healthy way to have the other students share his inability to walk. This may be interesting, not at all the same subject, but still touches my life in my memories…. we chose to all crawl, the eleven other children, my teaching assistant and I.would crawl to “circle” (where lessons and books were read) with him. This little boy didn’t get a wheelchair until he was five years old so he was quite adept at combat crawling. His parents got divorced, stress for those who raise children with disabilities have only a 75% chance of staying together versus 50% of all marriages with “no problems” (as if!) survive.
Best wishes for a wonderful week, Sherri. You have warmed my heart in ‘listening’ to my thoughts, as well as how you show your true love and affection for your bright and talented daughter! Hugs, Robin
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