My Spectrum Journey

Asperger’s, It Isn’t A Label, It’s A Diagnosis

March 23, 2015
sperger's Syndrome

Conall’s pushed one of the twins in the river.

This was the sentence that began our journey into the world of autism. He was four, had just started school and had always been a handful and a bit prone to tantrums and aggression. To give a complete history, he was born full term, not a pleasant birth, vacuum, episiotomy, the complete spa treatment. He scored 10/10 on his Apgar score but cried nonstop in the hospital. He took two weeks to latch on to feed, they even had breast feeding experts visit my bedside in the hospital and pincer grip my nipples. He was my first child and I assumed I was spoiling him. I was told I held him too much… how does anyone have the emotional strength to separate themselves from their beautiful, sweet-smelling (most of the time) baby? My Mam blamed breast feeding. She didn’t come out and say it but she was deeply suspicious of the whole business and if someone’s child acted up she’d often ask “was he breastfed?” and if the answer was yes, she’d look knowingly at me. Conall was slow to talk, over 3 and his first word was light, followed by “there you are”. When he found his feet, he had a tendency to wander which brings us back to that river. I had just returned from a scan on my 3rd baby and Conall had been really well behaved in the hospital with me so I allowed him out with his friends, the twins from next door. He had persuaded them to walk up to the river which is a about ten houses away from our house. He told one of them to throw some rubbish in the river and when he refused Conall said he’d push him in if he didn’t. He refused again and my son pushed him in. Thankfully the water was low that day but the boy had a gash on his head where he hit a rock. I was shocked to my core,  I knew he could be stubborn and aggressive and was prone to major meltdowns but to act maliciously (and litter!) was unconscionable to me. I called next door to apologise but the house was in uproar and I left. I sobbed for hours and I met with his teacher the next day. She probably thought I was a hormonal mess but agreed that something wasn’t right. My neighbour called and we both had a cry. She was amazingly kind and sympathetic and as a mother of 5 confirmed what the teacher had said.

iStock_000015719845SmallI made an appointment with our GP and listed all my concerns. I had always harboured a feeling that he had ADHD but the doctor was the first to suggest Asperger’s and refer us on. Strangely the first person I thought of with Asperger’s was a contestant on America’s Next Top Model years previously who seemed robotic and spoke in a monotone. When I got home I googled the bejaysus out of that word and had so many lightbulb moments. I decided to go see a child psychiatrist privately to get an official diagnosis. We met with the doctor quickly enough and it was a nerve-racking experience. He was a middle aged man who immediately put me on edge. I felt as if I had Munchausen by proxy and was just exaggerating “typical boy behaviour”. Conall of course behaved impeccably in his office causing the doctor’s well-coiffed eyebrows to ascend a little further. He suggested Conall was a little young for a diagnosis and to come back in six months. He did however comment on Conall’s lack of eye contact which oddly I hadn’t noticed prior to it being pointed out. We felt really deflated (emotionally and financially) and endured another six months of erratic behaviour. When we returned the doctor suggested my husband take our son out for a walk so we could talk privately. Conall didn’t want to go so I suggested my husband take him to the shop for “something nice.” When they left, pompous pants said you shouldn’t have to bribe your child. I was immediately on the back foot and felt like a shite mother. He started to ask if I spent time with my son. I said as much as possible considering at this time I had two other boys under two. He asked “but are you on your phone when you’re with him or are you with-with him?” Of course I lied and said with-with him, definitely not on facebook or checking the clearance in Argos. He asked was my husband a “hands-on Dad”? He suggested a parenting class. By this stage I was blinking back tears and a complete wreck. Before a diagnosis he wanted me to see a psychologist and do a parenting class and possibly remortgage my home. I left there reeling, I felt like I’d spent time with an emotional vampire. My husband was furious, but like the polite Irish/Turkish citizens that we are, we gave over another briefcase of cash. I bawled all the way home in the car, torn between rage and despair.

After that I got proactive!

Anyone else out there who has a child with Asperger’s that would be interested in meeting for a chat?” This was the plea I posted on a local Facebook page. Slowly responses pinged in my private messages over the next few days… It was great to meet with mothers who were beginning on their spectrum journey or were further down the road; individuals to chat with and learn from..  In the meantime the public services were dragging their feet and Conall still didn’t have a diagnosis.  A professor and an expert in this field was recommended to me and I rang up and got an appointment pretty quickly. I didn’t know what to expect and was apprehensive after my last shrink appointment. I was put at ease straight away as there wasn’t an imposing oak desk between us and he seemed genial in a gentle college professor way. He fired a tonne of questions at me as Conall sat drawing. They required only simple yes or no answers. I answered yes to every question except “Does he spin?” At which point Conall looked up and quite calmly said “no I don’t” (he does).

Éamon de Valera

Éamon De Valera may have been autistic.

The diagnosis was no surprise… Asperger’s, ADHD and Oppositional Defiance Disorder. The professor removed his academic hat for a few minutes to explain how some of the world’s most successful people have Asperger’s and gave the example of De Valera. I was relieved to have an official diagnosis (as was my wallet €300 lighter) It’s amazing how many people ask “are you sure you want to label your child?” My response is, “it isn’t a label, it’s a diagnosis“. I was relieved to have a label; On a selfish note it meant I wasn’t a crappy mother who couldn’t discipline her own child and my son was not a brat but a kid full of anger and anxiety due to the fact that his brain wasn’t functioning in the same manner as a neurotypical child. I’m awash with guilt as I type this and memories of my frustration and anger at an aggressive and defiant toddler surface. It’s tough when it’s your first child and you haven’t a clue what you’re doing anyway but like anything it’s a case of taking each day as it comes and trying to do the best for your child. It’s too long and boring to go into the short-comings of the public services. You need only to be a member of one of the many autism support groups on Facebook to understand that this is the norm. It would be nice for someone to sit us both down and ask what we’d like or need? I was so excited to get into the system as I thought so much would be done but I’m beyond relying on the public health system now. For Conall, psychology is having an open dialogue with me. I ask him every day what his high and his low was and try to glean his mindset from his answers. For someone with not much emotional regulation, he can certainly keep his inner feelings in a vault but “chats” at night can sometimes let me gain some insight. I worry about him when he hits puberty but I will always be open about his diagnosis as I feel it is something he will need to embrace as early as possible and indeed celebrate. Occupational therapy is done through wearing tight vests, lots of  hugs, swimming lessons, hip hop dancing and just running around the house like a mad fecker, occasionally dropping to the floor for a few press-ups. Speech and language is dealt with by fostering friendships, school, and extracurricular activities. There should be no stigma attached to Asperger’s or for any kid on the spectrum. Before I had Conall, I would judge tantruming kids and their parents with no thought for any underlying issue bar the need of a good wallop. My hope for this post and the next is to make you think next time you see a harangued parent struggle in Tesco. Also talk to your kids about inclusion in school and at play, there is heartbreak in watching your kid stand alone talking to himself in the school yard. Put on a bit of John Lennon’s Imagine there while you ponder these things, it was playing instrumentally in my mind as I typed the last paragraph, makes it more powerful.

In my next post I will explain in more detail our personal journey with the idiosyncrasies of Asperger’s. I’ll talk briefly about the negatives but more importantly, I’d like to highlight all the positives, and there are many that a child with Asperger’s brings.

It is a good few months since I wrote this and I had something to add. I recently told a friend on a night out that I thought her grown son had Aspergers. I struggled with this disclosure for a long time but she seemed relieved and said she’s look into it. Since then he came to me to thank me for telling his Mam as he now attends a support group and having a name for his perceived differences has helped him greatly. I have watched him, flourish and if I do nothing else good with my life I’m happy! It proves the point that a diagnosis is key and he in turn has promised to give me insight into teenage and adult years with Aspergers. You know who you are and I wish you nothing but happiness.

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72 Comments

  • Reply Katie freeman March 23, 2015 at 11:51 am

    An inspirational bit of writing your blessed to have him in your life x

    • Reply Aisling March 23, 2015 at 11:54 am

      I know, thanks Katie

      • Reply philomena layden March 24, 2015 at 12:47 am

        Well done,it brought tears in my eyes reading this,l had one bad experience and it was in a hospital, they were looking down on me as a bad parent, when they themselves couldn’t understand why my child had a high temperatures and couldn’t see

    • Reply Suzanne March 23, 2015 at 1:35 pm

      Inspirational

    • Reply Jackie Metcalfe March 24, 2015 at 10:36 pm

      Brilliant

      • Reply Aisling March 24, 2015 at 10:56 pm

        Thanks Jackie xxx

    • Reply stephany March 27, 2015 at 1:55 pm

      I’m feeling so lost and alone in this journey with my 11 yr old son. Thank you for sharing.

      • Reply Aisling March 27, 2015 at 2:24 pm

        You don’t have to be, there’s probably plenty of others in your area in the same boat!

    • Reply Dawn March 29, 2015 at 10:15 am

      Aisling, thanks for this article! It just reinforces that I, and many others, aren’t alone! My son turned 18 in December 2014, and he finally got a diagnosis of aspergers just 13 days earlier! My husband and I had been banging our heads on a brick wall for years, and it got to the point where I had to get our local MP involved! For us it was too late for any real support, although we did everything in our power to get it, especially during his education (we’re still doing what we can as he’s in college). I wish the powers that be would stop and really listen to parents who have genuine concerns about our children and then we wouldn’t be made to feel we’re bad parents!! Well done in not giving up!!

      • Reply Aisling March 31, 2015 at 7:18 pm

        I’m probably lucky that people are more aware of aspergers and asd now. I know few people with teenagers in your position. I think Jennifer O’Toole does very helpful books for teenagers.x

        • Reply Dawn March 31, 2015 at 7:21 pm

          Thanks….. Will have a look.

    • Reply Gen Gomes March 4, 2016 at 9:44 pm

      Hi Aisling I eventually found your fantastic blog:-)!!Truly beautiful read and Conall is blessed to have a mammy like you. I hope too I can acquire your insight over time with my aspie son Michael.It made me laugh and cry.I will chat to you soon.Gen xx

  • Reply orlagh March 23, 2015 at 12:14 pm

    Another great piece . More serious than all the rest, but im sure u will touch the lives of many other people by helping in the awareness of Aspergers, you didnt sit back and just think your son was a bit hyper and going through the terrible “TWO`s” you did something about it and that I admire you for. You kept going until you got to the end of it, he s a lucky boy to have parents like you and Oz xxx

    • Reply Aisling March 23, 2015 at 12:19 pm

      Thanks Orlagh. We’ll never forget that Summer in Turkey with him… I’m including that in part 2 lol

  • Reply Lesley March 23, 2015 at 12:14 pm

    Aisling that brought a tear. What a prick that first doctor was.

    • Reply Aisling March 23, 2015 at 12:18 pm

      PRICK Lesley! and he worked for Temple St private so I thought he’s be the best. Cost in excess of €500 to see him twice (about 40 mins sessions)

      • Reply Lesley March 23, 2015 at 12:22 pm

        Jesus. Now that conall has been properly diagnosed and your clearly a wonderful mother you are due a refund off that fucker.

        • Reply Aisling March 23, 2015 at 12:39 pm

          I’ve thought of it. When I’m on Midday (a strange fantasy of mine) I’ve a list of names to settle scores like Father Ted at the Golden Clerics

          • Carolyn March 23, 2015 at 1:43 pm

            Sounds like a real charmer. He could refund your five hundred euros ten times over and he could never undo the damage he inflicted on you mentally and emotionally by making you feel like Conall’s behaviour was due to your negligence. So glad your journey didn’t end with him. You listened to your heart and your gut and Conall is as lucky to have you as you are to have him!

          • Aisling March 23, 2015 at 6:47 pm

            Thanks that means a lot. But seriously, 10 times over, do you think? Better Call Saul

  • Reply Patrick Ryan March 23, 2015 at 12:41 pm

    Love your honesty ash xxx well done brilliant as ever

  • Reply Lisa Phelan March 23, 2015 at 12:54 pm

    Well done Aisling, in more ways than one x

    • Reply Aisling March 23, 2015 at 6:44 pm

      Thanks so much Lisa x

  • Reply Jen March 23, 2015 at 1:22 pm

    He’s lucky to have such a formidable mammy

  • Reply Dylan Ryan March 23, 2015 at 1:25 pm

    You have the remarkable ability to write about such a difficult subject with great wit and comic language without taking away from the underlying serious tone. A very inspiring read. Looking forward to the next update 🙂

    • Reply Aisling March 23, 2015 at 6:45 pm

      If I ever get a book deal, I need you to write the blurb. I will bask in that compliment for quite some time.

    • Reply Brth Moore March 27, 2015 at 12:08 pm

      It’s early and I haven’t finished one cup of coffee yet, so I can’t put into words how brilliant you are. I will just say ditto to what Dylan said! It’s perfect.

      • Reply Aisling March 27, 2015 at 12:17 pm

        That was succinct but lovely, thankyou

  • Reply Susan Daly March 23, 2015 at 2:01 pm

    Superbly written – you’re an inspiration! I know I’ve told you this a million times but Conall’s very lucky to have you as his Mammy (even though he’s inherited your love of poo-talk). Looking forward to reading the next chapter x

    • Reply Aisling March 23, 2015 at 6:48 pm

      You know all of this is building up to a post on poo? I’m just gaining everyone’s trust so I can talk about my obsession

  • Reply Paula Nolan March 23, 2015 at 2:12 pm

    Hi Aisling,
    I’ve just read your piece and it reminds me so much of our own story. It’s a big deal to write about it but for the greater good I think. Well done on such a lovely piece and I look forward very much to the next installment . I wrote about my twin girls on my blog last September. They too have Aspergers. I wanted to set the record straight about them and to highlight all their good points and not dwell just on the negatives of living with autism. It got a great response and the Irish Times published it before Christmas. Have a read some time. It’s on my blog and called “double trouble”. Would love to keep in touch and we could compare notes whilst we travel on this bumpy but at times beautiful journey with our children. Well done again, Paula xxx

    • Reply Aisling March 23, 2015 at 5:03 pm

      Definitely Paula, thanks so much. I’ll take a look when I get these monkeys to bed. I look forward to it. x

  • Reply Laura maloney March 23, 2015 at 2:20 pm

    Brilliant Aisling loving your honesty looking forward to the next one xx

    • Reply Aisling March 23, 2015 at 6:50 pm

      Thanks Laura. I’m looking forward to writing it… probably on my lap, behind a locked toilet door

  • Reply Fiona March 23, 2015 at 7:41 pm

    I’m really enjoying your articles Aisling, you’re like a non-fiction Marion Keyes, combining the serious stuff and the humour. I remember approaching you about a play date for our boys all those years ago – you spent several minutes warning me about what might happen, and I thought to myself, this play date may be an even bigger deal to her than it is to me (my own little darling was not exactly shining in his ability to make friends at that point, I was panicking a little)! I look forward to the next instalment 🙂

    • Reply Aisling March 23, 2015 at 7:56 pm

      That’s so funny Fiona, I have zero memory recall but at that stage especially as I was extremely nervous of play dates. I realised early on that it was not the cup of tea and chat scenario I hoped for but a lengthy game of damage control.

  • Reply suzanne March 23, 2015 at 8:45 pm

    Beautifully written Aisling – you are an inspiration to mammys everywhere – each one of us on our own personal journey and reading the insight into your own journey it helps us all along the way xxx

  • Reply Michelle Lawlor March 23, 2015 at 9:26 pm

    Beautifully written Aisling. I am a year into my autism journey with my beautiful 3 year old daughter & can relate to all of this so well, also diagnosed by Prof. Fitzgerald. Look forward to your next piece.

  • Reply carla brady March 23, 2015 at 10:08 pm

    Amazing mammy ♥ …. very good piece …x x

    • Reply Aisling March 23, 2015 at 10:22 pm

      Thanks, love you x

  • Reply karen Perkins March 23, 2015 at 11:28 pm

    Brilliantly written aisling .so honest .you are a brilliant mother ..never doubt yourself x

  • Reply Olivia Winston March 23, 2015 at 11:45 pm

    Very insightful and educational. Thank you.

  • Reply fiona March 23, 2015 at 11:46 pm

    Aisling your writing is so touching and funny yet serious in this post. I read lots of mum blogs (office mum, bumbles of rice, how to marry an irish farmer etc) but none who have a child with special needs. It puts into perspective the struggles we think we have with our own children, not struggles at all im fact. As a sibling to a down syndrome child I also think inclusion us something to be actively taught to children and celebrated. Best of luck to Conall as he becomes whatever he wishes to be (maybe president like de Valera) xx

  • Reply Gwen March 24, 2015 at 4:16 am

    I love reading your stuff Aisling. This piece is brilliantly written. I look forward to reading the next one. x

  • Reply Gwen March 24, 2015 at 4:19 am

    I love reading your stuff Aisling. This piece is brilliantly written. I can’t wait to read the next one. x

  • Reply Marianne Dienes March 24, 2015 at 8:47 am

    This one brought tears to my eyes for very different reasons than the last. So inspirational. I work a lot with adolescents with ASD and I will think of this story when their parents are recounting to me how and when the diagnosis was made, gives me a new perspective on what they are likely to have gone through. Sorry to hear about your ( sadly all too common) crapola initial experience and glad you eventually got the diagnosis that opened doors for Conall to get some support. Can’t believe that jerk didn’t think that conversation should have involved both parents and was so clearly looking to mother blame! Looking forward to the next post.

    • Reply Aisling March 24, 2015 at 10:19 am

      Thanks Marianne, especially for your use of the word crapola, it’s very under used.

      • Reply Marianne Dienes March 24, 2015 at 10:38 am

        It’s a highly technical term 🙂

  • Reply sinead March 24, 2015 at 10:43 am

    Well done aisling great piece of writing … hope all good with you x

  • Reply Maeve Kennedy March 24, 2015 at 11:25 am

    Love reading your articles looking forward to the next one

    • Reply Aisling March 24, 2015 at 11:27 am

      Thank you Maeve!!

  • Reply Emily March 27, 2015 at 10:27 am

    Amazing piece of writing! My daughter is also diagnosed with Aspergers, Oppositional Defiance Disorder and has Atypical Abscence Epilepsy. It could have been me writing this piece! The ‘Terrible Two’s” that never ended. The “oh it’s just a phase” comments. Getting a diagnosis didn’t really help me, we already knew what was wrong, it helped me to realise that I wasn’t a parent that couldn’t cope, but a parent that had coped immensely well, all things considered.

    • Reply Aisling March 27, 2015 at 10:42 am

      I was just thinking this morning about how excited I was to have a diagnosis and all the doors that would open. Unless you’re very wealthy, the help isn’t near good enough. Like I said a mother’s understanding and patience is the best therapy. I don’t care who stares now when he’s in a meltdown, I focus on him and the rest is background noise. I love that; “I wasn’t a parent that couldn’t cope, but a parent that had coped immensely well, all things considered.”

  • Reply Yvonne Daly March 27, 2015 at 11:06 am

    Thoroughly enjoyed reading your article Aisling. You’re a very talented writer being able to write about a serious issue with such wit and honesty. If only us Mums were in charge of public services and able to put the children first before the fatcats bonuses! I too have written some blogs on my website as what we write is from the heart and not from some textbook. So called ‘professionals’ would learn so much more from us than from the usual ‘triad of impairments’ script. Onwards and Upwards!

    • Reply Aisling March 27, 2015 at 11:28 am

      Thanks Yvonne, I tried reading so many books at the beginning but I think at some point you have to just go with your gut as every kid has such different needs. Women should rule the world… well not Sarah Palin, Kim Kardashian or Katie Hopkins, but you know what I mean!

  • Reply Nikki March 27, 2015 at 12:25 pm

    Just read your post. Brought me close to tears. I believe my 10 year old daughter has Aspergers and initial assessments have indicated I could be right. I feel so alone sometimes because friends (who don’t even spend time with my daughter) attack me when I mention it – I too feel like they think I have some kind of Munchausens by proxy!! People don’t understand that I am not wanting to label her, I am wanting to be able to better understand how she views the world!

    • Reply Aisling March 27, 2015 at 12:27 pm

      Screw them, honestly do what you feel is right. There is nothing stronger than a mammy’s gut instinct. I’m giving you a virtual hug.

  • Reply katherine March 27, 2015 at 5:42 pm

    Thankyou. TEN months into Autism Assessment waiting list on NHS I appreciate hearing you sharing some of our experiences so much.

    • Reply Aisling March 27, 2015 at 6:03 pm

      Thanks for reading! Don’t put too much faith in the services.. not sure what it’s like in the UK but you’re best equipped to help your child x

  • Reply Carrie Flynn March 27, 2015 at 8:06 pm

    Aisling that was a heart felt piece. Genuine Excellent mummy

    • Reply Aisling March 27, 2015 at 8:15 pm

      Thanks Carrie… and thanks for the milk lol

  • Reply Laura March 30, 2015 at 12:49 am

    I can really feel your pain and frustration. I’m only after getting my diagnosis after 30 years of running to, complaining and being fobbed off by numerous doctors. Whatever support and services there are for children there is even less for adults. Wishing your wee boy a bright and happy future xx

    • Reply Aisling March 31, 2015 at 7:13 pm

      I’m sorry to hear that Laura. I hope everything works out for you x

  • Reply Kim April 6, 2015 at 12:50 am

    Im at the start of our journey- my three year old son, who has the speech and language of a 18 month old has just been informally diagnosed by his Ped two weeks ago. I have been in a state of grief for the last week (but not shock- I don’t suppose we ever are, are we know its got to be SOMETHING. And yes- the Googled list of ‘signs’ was like a bolt) Its really refreshing to hear someone say all this things I have been feeling, all the crap things, especially your reference to your son as a toddler. The guilt and frustration and hurt were all feeling is tangible at the moment but Im hoping with the support of other parents I can get sorted in my head and get the best for him. My version of him pushing someone in the river is the good old scratching and pushing at preschool. Everyday. Here’s to a better time after Easter there now we have some idea x

    • Reply Aisling April 6, 2015 at 2:13 pm

      Kim, I know exactly how you are feeling but it will ease. It’s like a grieving process and acceptance does come. Seek support from your friends and family and as he gets older he will learn to control his temper and emotions more, I promise. x

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