Living with autism 101

So a few people have been asking questions in relation to MO recently. So as I did a catch up brief story on BBG yesterday I thought I would answer a few of the most common questions here, ending with questions/statements that have been asked and I just want to answer them as to be honest people may not know a lot about Autisim Spectrum Disorder (ASD) so although they seem silly it may generally be something they think.

Autism is a spectrum, some people will have different traits, some are timid with their frustration and will retreat away, others like MO will lash out. Again it all ranges and this blog post is about my personal experience.

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When did you realise MO was different?

I noticed the difference between MO and BG when he was around 15 months. It wasn’t really anything in particular. He was just VERY particular in certain things, we had to do his bed time routine completely the same each night, if we  didn’t then we would have to go through a few hours of just plain screaming and kicking. Now I am not talking about a normal toddler tantrums, these could last an hour or more. His eyes would change and you would look into them and he just wasn’t in there, they seemed empty. He would scream at different clothes when they touched him, he was very fussy on his food as a baby and would only eat a certain baby food and when we got to solids again it would only be certain foods. I would find him standing by the wall and just ‘walking into it’ just standing on the spot, with his head against the wall just walking… I didn’t think it was Autism as his talking was fine, in fact he spoke bang on time. I just assumed he was a strong willed little boy that liked things certain ways, I mean boys are different to girls everyone knows this and he was completely different from BG. Looking back I can see all the signs, all the traits but back then he was just extremely hard work. Writing down all the little things doesn’t give the differences enough credit but he was different.

I guess I didn’t start to really think he was on the spectrum until we were living in Prague. We had a strict routine, mainly because of buses and getting home and if you missed the bus it would be an hour wait, but when this changed he would scream and hit. If I got to nursery too early again 20-45 minutes of just pure hitting and screaming and lashing out. I would phone up Dad in tears, saying I didn’t know what to do… I don’t know what I thought he could do I mean he was at work, he couldn’t just come and help us. His behaviour got so bad it triggered my depression off. We moved home to come close to family as I was at breaking point. My little boy was just kicking off at anything, he was physically hurting the others, he was all out of sorts and I didn’t know what to do. I thought he was on the spectrum as the routine was very strong… but I just didn’t know how to cope. In Prague I would call up my mum and she would say, ‘no no no, he is fine, his like this because you aren’t yourself and not coping’. To be fair on my mum she had a point, she was in a different country and her depressed daughter calls to say her son isn’t right, you would think it was because of the depression and this was his way of coping… Anyway we moved home and I went to work full time.

After being back in the UK for a year, MO wasn’t getting better, he would have to have certain things in a certain place, he was particular in his clothes, everything just had to be right. His routine was extremely rigid, we couldn’t change it. I couldn’t take him anywhere without him lashing out. Everything was right or wrong there was no grey area there was no lee way, I just didn’t know what to do. We rang the health visitor and at 4 and a half he was referred for an autistic evaluation at our local health care centre.

So in answer to that question looking back I can see it as early as 15 months. I thought about it when he was 2ish but thought it was circumstances but KNEW when he was 4 and a half.

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15 month old MO walking and climbing the wall which he would do often and it could last for more then 15 minutes.

He still does this randomly I have no idea why…

 

What did we do when we found out?

Once the health visitor had taken us seriously, we researched like anything! I took a lot of online courses and found out how to help him. We spoke to people who work with ASD Children day in, day out. We stopped stressing and raising our voices and chose soft but stern voices. We changed our language, we used positive words and point blank words, ‘no we sit on a sofa’, this was used instead of ‘stop jumping on the sofa’, where he would then climb all over the sofa, ‘we do not hurt our sister’ instead of saying ‘do not punch her’, otherwise he would just kick her.

We started to note what would frustrate him. We picked up on what he does when he is getting frustrated. We noted that when he is starting to get frustrated he moves his fingers, he starts to pull his hair, he then moves on to clenched fists etc.

We learnt the routines he had to follow, so bedtime being bang on 8pm and getting a clock with a second hand so he could see when it was exactly 8pm.

We don’t change plans and if we do have to change plans we make sure we have certain calm down things ready.

We learnt not to feel hurt that he doesn’t like to kiss us good night, we learnt that we can tuck him in and get a high five and that he gradually started to let one of us a night give him a cuddle and a kiss on the forehead.

We learnt that he can’t handle certain noises and that they make MO uncomfortable. We have learnt that when he is stressed he repeats sentences over and over, his stims get worse by the fact he bangs his heads, he twirls his hair more so that the outside hairs break and he will scream into a pillow so loud you can hear it outside. If he feels uncomfortable he will hide in a ball, he will flap his arms more and more pronounced, he will bend his arms into a strange shape and nod his head. when he is completely over whelmed he will hit and kick and shout and scratch and his toileting gets worse.

We learnt not to automatically help him when he struggles with a toy or when he is building something as he will get frustrated but to wait for him to ask for help and to follow his instruction, exactly.

We learnt major changes in everyday routines will come with a price and he won’t be able to cope, so much so one of the reasons we got induced with BBG was for MO, so we could tell him everyday and show him on the calendar for 3 weeks when the baby was coming.

We learnt little things we don’t even realise are actually massive for him will affect him, changing the toothpaste, changing his bed or even moving his blankets to a different place than where he left them.

We learnt to let him do his cycle, he has to touch BBG’s head in a certain pattern, he wakes up and does the same circuit of the house during the night, he washes his hands in a certain order and a certain pattern. If you break this cycle he will start again and sometimes have to do the cycle 2 or 3 times extra to make up for the break in cycle.

We learnt he gets absorbed into a different world when something interests him, we learnt that he can listen to a song once and be able to recite it perfectly 8 months later. We learnt that he watches Jurassic Park and has learnt off by heart the different dinosaur noises. We learnt that he only gives proper eye contact when he is telling us something that he is passionate about. We also learnt once he gets going on a subject good luck stopping him from talking, even at 2am in the morning.

We learnt to love our boy in a whole new way and level.

We did however find that when the consultant agreed that he has High Functioning Autism with OCD and possible Sensory Processing Disorder and Echolalia that we cried (our local centre can only diagnose up to 5 year olds and due to the waiting lists we were seen 3 weeks after his 5th birthday and so although it is in his notes that she has diagnosed him we have been sent for the big old assessment in Kent and this can take years. We are lucky in a way that although we missed the 5 year deadline she was happy to say yes he has all these and noted them in his file). Dad cried on the way home from the assessment and I cried later that night in the bath. We mourned the easy life that could have been for our son. We cried with worry about the bullies in the future as MO is different and we cried that our son is a perfect hexagon trying to fit in a world that is only made for circles.

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How does it ACTUALLY affect your daily lives?

It is exhausting! He has never slept through the night and so 5 and a half years of no sleep is tiring.

Most of all I feel sorry for BG, SB and BBG…. MO has to have so much extra time spent on him, everything has to be by MOs clock. Everything has to be for MOs routine. We have to go round the zoo the same way, see the same animals, we have to go to the same caravan for holidays, we have to watch the same programs over and over and even then he has to rewind different parts over and over. Their lives are well and truly on MOs schedule and I feel guilty as a mum that this is the case.

They have to see him get frustrated and see him hit their mum and dad. They have to go to school and see the bigger kids tease him and wind him up as they know that he will react. (His school is AMAZING unfortunately kids will generally always pick on the kids that are different no matter how much the school tries to stop it). BG feels a personal responsibility over MO, she feels that she has to protect him, to make his bubble perfect and yet do not get me wrong, sometimes BG purposely winds him up, but what sibling doesn’t wind another one up.

We have a dark den and sensory area taking over half our front room as this is a way of calming MO, that it is a place where he feels safe on days that are chaotic on the outside of the house.

We can only go to attractions generally if it is after school or a non pupil day as the crowds over whelm MO.

We have to remember every little detail of his routine to make sure that it is all the same and give him plenty of warning when his routine is going to change.

We have to stay completely calm, and quiet while he is beating us or while he is wrecking his room. Afterwards calmly saying that he needs to learn what and how his body feels as his building up frustration and to try and remember what he does and  go and choose a calm down toy if he feels he can’t cope in future.

We have to teach him emotions. He can now understand happy and sad and he can see happy and sad on other people, however he doesn’t understand that actions can cause emotions. This is something we have to work on and it is extremely difficult.

He gets attached EXTREMELY quickly to a lot of things. He once held a bug all day as it was his friend. We then persuaded him to make a bug hotel and check the bug in…. was the bug there in the morning? Of course not and that equals an extremely heart broken MO. He can even get attached to stones or pretty much anything.

When it is clothes it is hard to wash and dry things in the same night for him to wear the next day, we have now got him to understand that they need a wash and that it can take a couple of days. It also means that he can wear the wrong outfits at the wrong time of year. For example he loved some red shorts last summer, summer finished and those shorts were still worn…. one quick dash round the shops and I managed to get some red trousers to replace the red shorts, I wasn’t sure if they would work however thankfully they did.

In essence our every day lives are changed A LOT!

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We told him it was a pj day but forgot we were going to my mum’s house so he refused to get dressed and went in his pjs as it was a pj day

 

Can he stop himself loosing control?

Unlike you or I MO’s brain doesn’t work like ours. For us when we get confused or frightened or angry we know the correct and appropriate way to deal with the situation. We may retreat back, we may cry or we may just shout but the main point is we understand why we are feeling the way we are. For MO he has no idea what he is feeling or why he is feeling it… he can’t vocalise or tell us when he is frustrated and he finds it hard to communicate how we can help him. So he looses control. Sometimes he just needs to go into a ball and block everything out, he hides away from situations that scare him, that are uncomfortable for him etc. However when someone touches his wall that he has built etc he gets frustrated, like any child would get, however he can’t express this frustration and so this bubbles and he lashes out. Honestly I am still getting my head around it but we are teaching him how to recognise his body, recognise that when he is frustrated he clenches his fists, when he does that he must go and calm down using his dark den or watching his sand timer etc. It is extremely hard but at the end of the day we have to get him to recognise what his body does when he feels frustrated or emotional and teach him how to calm himself down before he lashed out as when he is an adult he can’t go around throwing tables. I don’t know how well this will go and to be honest I don’t even know that we are making any progress but it is something we have to keep telling and showing him.

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On a bad day he hides he couldn’t cope with this particular day

 

Autistic children don’t have feelings do they?

As mentioned above, yes they do have feelings, they just find it hard to recognise the feelings. MO feels sad and happy and angry he just can’t express this like we do.

Does MO have friends and does he need friends?

This really varies depending on each ASD child. For MO he does have friends and thankfully his friends are very good and know that he is a wonderfully kind and funny boy but he just needs help sometimes. MO wants  friends however can’t get his head around friendships and what they actually entail… he has a friend that he adores, he loves playing with this friend however he also gets VERY angry as this friend won’t leave him alone… well that’s because friends do want to play with you and sit with you etc but for MO he doesn’t need this, he doesn’t understand why they want to be with him all the time. I am not sure about other ASD children like I said but for MO he will happily play with other children but then will quite happily just walk away half way through a game because he has finished not understanding that the other people haven’t finished.

Does MO really take things literally?

YES! Everything he takes very literal. You have to be extremely careful how you word things. Don’t say you will be with him in a minute when actually you mean in 5 minutes.

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We told him to put his clothes neatly into the dirty washing basket… this took 15 minutes to do

Isn’t he just naughty? I mean everyone gets diagnosed with autism just learn to control him?

No… just no…

He is the most loving, sensitive and funny boy you will come across he just struggles.

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He won’t hug but he will lay on you and this is fine by me 🙂 he won’t give dad any physical affection unless absolutely required is I am not there.

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Dads birthday MO gave him his hand to hold. Dad cried

 

Just change his diet and get him out to the park to burn off some energy that will cure him….

Again diet has hardly any affect on him but we do try to keep his food as healthy and as organic as possible.

As for letting him burn off his energy… you can’t run and cure conditions like this… maybe obesity but not autism

How did he catch Autism? (Yep serious this was asked)

You don’t CATCH autism… I don’t think they have officially found out what causes it but without going into details I believe it is some sort of genetic thing, I don’t really know too much about it but I would say genetics way heavily for MO.

So this I think was the easiest way of talking about my beautiful boy. He is amazing and so clever, he is just wired differently and different isn’t wrong it just means he thinks outside our box. He is an awful lot of work but he amazes me everyday and for this I am grateful.

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