Kids & Parenting

Living with a child with Aspergers Syndrome….

My gorgeous, affectionate little seven year old boy has Aspergers Syndrome.
When I tell someone he has Asperger’s I get asked ‘What is that?’…..

So due to the lack of understanding about Aspergers, I have decided to do a post about Aspergers to gain awareness of the disorder in the community.

Aspergers Syndrome is one of the ‘Autism Spectrum Disorders’. Aspergers syndrome children will have many behaviours that are similar to those with autism, but they have better language and cognitive skills (Cognitive skills is the mental processes of perception, memory, judgment, and reasoning, as contrasted with emotional and volitional processes). While Asperger’s Syndrome is closely related to Autism, it is not as severe as Autism.
Aspies have difficulties forming friendships, an inability to understand that communication involves talking as well as listening, an inability to understand the rules of social behaviour, the feelings of others and aren’t able to ‘read’ body language. Children who suffer from this disorder will typically exhibit distinct awkwardness when in just about any kind of social setting, as well as an all-absorbing interest in specific topics or subjects. His behaviour can vary from mildly unusual to quite aggressive and extremely difficult (those are the really fun times. I think someone once said “Parenting isn’t a challenge, it’s an adventure” So true!).
Aspies have rules and rituals that they insist all family members follow and get upset or aggressive, if they aren’t. Tim (my husband) usually bares the brunt of most of the aggressiveness. They are also sensitive to loud noises and cannot handle noisy/ busy/ heavily populated places like shopping centres etc.
Aspies have higher than usual intelligence, extensive vocabulary but many have difficulty with the practical use of language.
Due to the current funding criteria for funding in government schools, we (and a lot of others with Aspergers) have been denied funding for a teachers aid, even for a few hours a week, as Aspies are deemed ‘not bad enough’ and ‘too intelligent’, yet they require that one on one time to assist them with their learning and understanding. So unfortunately, a lot of kids with Aspergers slip through the schooling cracks without any help. Nearly, all the work with an aspergers child lands solely on the parents shoulders from researching how to help your child, to finding therapists (speech and occupational therapists), motor skills therapy, play therapies, learning how to deal with meltdowns and their behaviours etc.
Some parents even home school their children because their children can’t cope in the school structure and don’t receive any assistance through the school system, so they take on the responsibility of educating their own children as a consequence. 
After a child turns 7, you cannot receive any funding assistance for the above therapies or anything the child needs, it is all out of pocket expenses for the parents. Out of $150 for one session of therapy (be it speech or O.T), you only get $70 back through medicare and that is through the special autism spectrum rate. So $50 per session, per week, per therapy very quickly adds up.
There are early integration programs in place for children with an Autism Spectrum Disorder but most children aren’t diagnosed until they are in kinder or even in school.
Thomas might have ‘meltdowns’ in the middle of Coles, have trouble deciphering what is going on outside of ‘Thomas’s world’, he can be quite blunt and we have to be careful when joking or being sarcastic as he takes everything literally, can talk nonstop about Star Wars, Lego etc but he is my little mate. He loves nothing more than having a cuddle (one of the characteristics of Aspergers is they have to be touching you in some way to feel secure, even if it is just by holding your hand or having their foot touching you while they are sitting on the couch, much to his brothers annoyance), cooking with mum, playing the Wii, building things with Lego and watching Richard Hammond’s science lab and Top Gear! Our cat Kitty and Thomas have a very special bond, she just adores him and has a very calming influence on him. She seems to know when he is upset or anxious.
When we are out, some might perceive his behaviour as misbehaviour but you can’t judge a book by its cover and you can’t judge parents of children with Aspergers (or any child with an Autism Spectrum Disorder) until you have walked in their shoes. And no… he does not ‘need a good smack’, contrary to popular belief. The only way he can deal with his anxiety is to have a meltdown or be extremely difficult, unfortunately.
If I had a dollar for every dirty look or “well meaning” comment I would of been a millionaire by now…. Hmm there is a business idea! Do you think I could go up to the person and say ‘You owe me a dollar for your dirty look?” Wouldn’t they look then? Haha!! 
I have actually turned around to those who comment and tell them bluntly “He has Aspergers Syndrome actually”… the look on their face and the apology afterwards is priceless. Maybe next time they open their mouth, they will think beforehand. 
Why do people feel the need to negatively comment to strangers anyway (in any situation)? I wouldn’t go up to another person and make a negative comment about them or one of their family members. I just don’t comprehend why people do that.

Famous Aspies: Albert Einstein, Mozart, Bill Gates, Henry Ford, Isaac Newton, Al Gore, Woody Allen etc. Looking at this list, I am sure Thomas is heading toward a very bright future in whatever career he chooses.

 Hopefully, that has shed some light on Aspergers and what it is like to have a child with it.
More information can be found on these links:
Please follow and like us:

23 thoughts on “Living with a child with Aspergers Syndrome….

  1. Wow, thanks for the insight. He sounds like a gorgeous little guy, who is completely loved and well cared for.

    It just amazes me how judgemental people can be, especially when it comes to kids and parenting.

  2. Thank you for sharing your story. I’ve spent alot of my teaching career working with kids with Aspergers. I’m horrified at the total lack of funding and support offered to the children and parents in this situation in Australia. It’s quite different in the UK.
    You and your husband sound like wonderful and supporting parents. Your little boy is very blessed. xx

  3. Thank you Megan and Sarah for your kind comments.

    Yes, it is really hard to get any assistance for kids with Aspergers in Australia… although, Autism Victoria have been fantastic. Hard to get any monetary assistance though.

  4. I walk in your shoes – my son is 6. Thank you for a very perceptive post 🙂

  5. What a gorgeous child your son is. Adorable photo! This is a really important post and I am glad you decided to tell your story. I agree that therapy services are under-funded. I am a private OT working with kids with ASD. I try to keep my costs down, and do not charge any where near what you stated, but I know there are some therapists who do. It’s hard to find a balance between providing an accessible service and also generating an income. In private practice, overheads are high. I have room fees, insurance fees, registration fees etc. I am also constantly buying new resources to give the best possible experiences to my clients. Thanks for letting your readers know more about how Asperger’s affects your family. I learn more every time I speak to Mum’s like yourself. All the best to you and your son.

  6. Thanks for shedding some light on Aspergers. Its great to inform the public on why not everyone acts the same way, and sometimes, there is an excuse for what seems like “naughty” children. My son is 4 and is in the process of being tested for aspergers. His father grew up with it and is still learning coping methods in his life. hopefully being diagnosed will open more doors for my son, and get him into programs designed to teach young children how to cope with life. Even though there is still not much out there in the way of support, it is heaps better than it was 20 yrs ago. So hopefully the future will reveal great things for all involved. Thanks and good luck!

  7. I too walk in your shoes – my son has just started grade 1 and it is so true about the school funding which is very sad. Also the government needs to look at funding for therapies for children over 7 years of age. My son turns 7 this year so we are trying to get as much therapy in as we can but it is going to be a on going thing for many years and does take a lot out of your pocket – more needs to be done! Thank you for such a fantastic post! :o)

  8. Thank you for this post. I have worked with a number of Aspie children as a teacher and my son has a very good friend who has Aspergers. I love my son’s friend’s complete honesty, and his intelligent conversation. They share a love of lego & music, the friend always having ipod & headphones at the ready as a method of shutting off too much noise…
    I find it very frustrating that funding is not better for Aspie children both within schools and with speech and OT etc.
    My hubby works with an Aspie who has made millions due to his single minded focus.
    It saddens me that people are so judgemental of others in public places, instead of thinking what it must be like for a child and a parent.
    Your Thomas looks like a beautiful child with a loving family & a future filled with love, support and an array of possibilities.

  9. The outlay in your blog is clear for reading, I learn a lot, thank you! Wish you make a further progress in the future, I will always look through your website.

  10. thankyou for your story it reminds me so much of my five year old son jacob who is being assesed for aspergers. i can fully relate to all examples given including the couch foot one (it drives me crazy). i often fear taking jacob out anywhere, especially Coles or supermarkets, even the doctors is a challenge. the most recent problem is the kindergarden and school issue jacob screams and kicks and most days i find myself dragging him through the doors, he wil then need to be held by the teacher for up to an hour and forcebly removed from my grasp. he has such bad anxiety he has rubbed a series of welts all over his face. the funny thing is he has another side he is very itelligent and speaks very precisely his friendship circle is small at best as he finds it hard to know how to act around other children. jacob always has to be right, god forbid you should get on his bad side cause one minute he is fine and the next minute the room is trashed, he starts with the swearing and threats and becomes violent with those closest including his baby sister. As for the funding i believe some private intervention services in SA provide adequate school and health services funding for aspergers sufferers. The initial consult and assessments are very costly priced at roughly $500.00 for the assesment and $60.00 for the referal from the pediatrician. makes a very painful situation worse i think!

  11. Hi
    Thankyou for sharing your story. So many things I can empathise with you.

    We just had our darling 7yr old boy diagnosed with aspie’s and he will get a full time teacher assistant in class at his school – its a private school in qld. but it is funded by the qld education dept . we also were told we get 20 free sessions with therapists of our choice eg. speech, psych or OT. I hopt this helps.
    All the best.

  12. Actually through tis whole experience of having my son diagnosed with Aspergers the most hurtful and devastating moment was when my best friend told me she thought there was nothing wrong and that he was just being a boy (she has no sons!!!).
    She doesn’t speak with me anymore and I heard through the grapevine that I make things out to be worse than they are. She was my best friend for ten years and I am still devastated about losing her friendship. (we live in a small town).
    I wonder if any other mothers of children with disabilities have had this experience??

  13. Your story made me cry as I have experienced just about everything you have. My son is almost 14years old and has Aspergers and epilepsy. It took us many years to get both diagnosed. We have to put up with the comments and glares and as we live in a town in Central Queensland where there is limited specialists we still find it difficult to get help for him. Everything you described about your son from – the touching and the animals – this is my son. He loves our dogs and always has to be next me (which is hard on my older son who sometimes feels pushed aside) and holding my hand – this gets may looks when we are in public especially at his age – as I now have to stop him sometimes as he getting too old to do this. My newest challenge is that now he is at high school and the “normal” children tend to pick on him a bit as he is so vulnerable and doesnt understand when they are being sarcastic. It is hard when people dont understand how it feels when you worry every single day about their future and if they will succeed.

  14. Firstly, I love your blog.
    Secondly, I have a few questions regarding my son who is also living with Apergers I am so knew at this and really enjoyed reading your article and it helped with some of the questions that I had I want to find out more about assistance for educating my son and the schools role in this maybe you can help??

  15. just out of the blue, this is an old article, my husband has just been told he could take on a job in Melbourne.. we live in Qld and my son has been diagnosed in July with Asperger’s, relatively fast, I think, after his first term in grade 1 turned into a total desaster. he has been caught by a very caring team of teachers and a principal and is progressing. i have great hope that he’ll be able to continue his schooling in mainstream – if he has help!
    so .. Victoria.. does Asperger’s still fall out from any funding and one on one in the class ? or have they changed their criteria by now. do you expect it to change when the DSM-5 sets in? does it even apply in Australia ? sorry to attack you like that, but you seem to be quite informed on the matter and while I wont make our decision depend on it, i think i – and my boy – will be better off if we know at least what we are heading for…

  16. Thanks heaps for this blog. I am wife of an Aspie, mother to an 8yr old Aspie son, a 10yr borderline aspie son as well as 2 NT daughters. One day I hope it will be easier thanks again for the share. 🙂

  17. I'll immediately seize your rss feed as I can not to find your email subscription link or newsletter service. Do you have any? Kindly permit me know in order that I may just subscribe. Thanks.
    My web-site :: stop your anxiety

  18. Hi thanks for your insight. Its fun being an Aspie mum isn’t it. My gorgeous boy is nearly 13 now and as tall as me, but still always has a cuddle for me and his sister. My son wasn’t diagnosed until he was 10, had been bullied terribly in school, was classified as severly depressed with suicidal tendancies and seeing a psychologist!We susequesntly worked out that my ex husband (married 20 years) also had Aspergers and the specialist told me thats why i coped with my son so well. As a qualified youth worker who has worked with teenagers with all kinds of issues, I spent a long time berating myself for not realising what was happening to my boy, but the Doctor explained how introvert and guarded Aspies can be and insisted it wasn’t my fault. I still believe it was one of the hardest things to hear that my happy go lucky little man was planning on ending his life at 10! Thanks to a good therapist and a lot of love he’s now doing brilliantly. He’s currently writing a book ( on laptop of course, wont pick up a pen!)doing amazingly in Maths, and has a real talent for Comedy, he’s my little Sheldon! and i wouldnt change him for the world!!

  19. Hi. My son is 20 and I can honestly say he has matured into a well adjusted young man.Diagnosed at 7, it was a long struggle (bullying, school work and socialising) until he hit 15. He graduated high school, got his drivers license,bought his own car and works a full time job. He will begin university in Febuary, studying Education. He makes plans and follows through until he has achieved his desired end result. His dad and I are extremely proud of him. He has come a long way from the little boy who screamed and cried every school day morning.

  20. Thank you. This is the first time I’ve heard anyone mention the need for touch, but it describes my son exactly. He is recharged by touch, especially from me. My husband says it describes me too 🙂

  21. Congratulations on a well written explanation of Aspergers. You sound like you are doing an amazing job. It is fantastic to read a blog like this, that is inspiring but also really informative for those who don’t understand Aspergers. Thank you for sharing your experiences, I really enjoyed reading about them.

  22. Thank you for your post. I am starting to think my 3yo has aspergers, he will be seeing a psychologist shortly. At first i was devastated, but i am now learning to accept that its not the end of the world. Your post has helped me, thanks for sharing.

  23. I have a little boy aged 5.7. He is unique, quirky, individual and just been diagnosed with ASD or high functioning Aspergers. I have a background in Early Childhood and have felt for quite some time that some things were just not right. I returned to work in May 2012 and resigned in September 2013 as working was causing horrific consequences for my family. ‘Meltdowns’ were a common occurrence whether it be over breakfast, getting dressed, putting on shoes, brushing hair, me opening the car door and not my son, closing the car door, our eldest son getting in the car first, dinner choices…..the list was endless. For so long I felt like it was my fault, my parenting style, inappropriate discipline, clashing with my mother over what she thought he needed. Over the last 5 months, I have implemented some Circle of Security Parenting techniques, taken the time to be available for my son both physically and emotionally, attend an Early Intervention Parenting Specialist and visited an OT. I have now learnt a couple of simple measures that could have saved many meltdowns last year. The fight over shoes… he needed them tight, really tight…almost too small and I didn’t understand. We now have some tight fitting shoes and Velcro sandals… he now puts his shoes on happily. We have a tent like cover above his bed so he has somewhere to go to chill out. The journey has only just begun but I am proud of what I have achieved and what I am learning. By making changes in my own behaviour and reactions, my son is starting to relax. Not all the time but I have seen little improvements. That is all anyone can ask.

Leave a Reply