Autistic Children Blog

So, as you know, I have been diagnosed with autism now, and ADHD.  It’s quite a ride, so I’ll explain the whole process if there are other older people looking into this. Of course it will be different for everybody but this is my experience.

It’s taken ages but I understand why. Looking back on my previous post it was late February when I got my official diagnosis and I started with my ritalin on Tuesday so nearly 10 weeks in between.

After my appointment I had to go back to the doctors. They wanted me to have a heart monitor for 24 hours and blood tests to make sure that I would be ok to have medication. I am not bothered about having anything for the autism but would like something to help me with my impulsivity and sleeping issues. I had these tests and was on holidays so was excited to start the meds while not at work. I called but there was an issue with reading the heart report so would be a few more days. I burst into tears because it had been such a big buildup. Fast forward to more heart tests (ecg, echo cardiogram) and more doctors appointments and the doctor was satisfied that all would be good. Then began a month long wait for the doctors licence to prescribe my meds.

Finally I had the ok and had an appointment on Monday via phone and my script was sent. I am on short acting meds to start with and will work my way up. Once they know if it makes a difference they will either put me on longer lasting meds or change if they have to. So far I really don’t feel any different. I was concerned about the possible side effect of palpitations. I drink decaf coffee when I buy takeaway because I like the strong taste but not the effects, I hate the jitteriness. I had that a little bit on Tuesday afternoon but nothing bad, then nothing since. So I’m thinking the lower dose is to help my body get used to it. Mentally I’m feeling good but some other stuff has been going on that has made me feel good, and I have my 60th in Bali to look forward to in July so I don’t necessarily feel that makes a difference.

The things I’m not keen on now. Reading (and having to stop myself at times) about the combination of autism and adhd is a bit scary and makes me quite sad. Being on medication for adhd can highlight the autism traits significantly. I don’t feel they are major to start with but I also am not really aware of what is part of what. Maybe when I feel shit about myself it’s actually the autism side and not the adhd side?

Sad wise I read so many things that I can relate to and, although I may not have been able to change my impulses, I could forgive myself more for them. Most things I have fucked up in my life have been because of my big mouth. I think briefly, I tell myself to keep it to myself, then I say it anyway and regret it the minute I say it. Then live through the aftermath feeling crap because I know if I had shut up it wouldn’t have happened! Most friendships I have lost over the years have been because of this. My self loathing and humour go hand in hand though, when telling these stories to friends I still laugh even though I hate it!

Will keep you posted with how I go with meds! Now to get Beth’s assessments properly done and see if we can help her moods which are ruling our household!

So… I’ve been putting off getting an official diagnosis for myself but I have had all the reports done for a little while and had been sent a list of telehealth providers so decided to bite the bullet!

I have 2 weeks off at the moment and booked a session this afternoon. I thought it was yesterday and panicked because I didn’t have google chrome on my phone. Thinking it was a voice phone appointment and realising it was a video made me go into a mad panic as I couldn’t bring it up! Then to find that my anxiety over the appointment had to start all over again today because it was in fact at 3pm today!

My psychiatrist’s name was Angela and she was absolutely lovely. We went through my history, including what Rachel (our social worker) had said in her reports to Angela. She went through how I felt about school, my early years, my working years, my addictions, my family history. Everything that basically either made me cry or want to cry! So many things I don’t like to even think about.

Things such as the yellow school room in high school that made me go batty and misbehave, the only room I would be kicked out of. That I was bullied during high school, that I liked hanging out with the boys more than the girls because there was no bullshit and games. That I am too much for some. That I blame myself for everything if there has been something go wrong at work. That I procrastinate and really want to sort my shit out but sit there and think about it instead. That I wake up early in the morning and lie there and can’t stop thinking about EVERYTHING! That I had depression and have had anxiety for as long as I remember. That my brother clearly had aspergers though it didn’t have a label then. That I hate how short tempered I am but I can’t help it. That Paul’s chewing drives me bat shit crazy! That I get addicted to everything, I am an alcoholic, I smoked 2 packs a day and I am a serial dieter, either eating for a diet or bingeing like I am at a kids birthday party. That I interrupt absolutely everybody, which I hate but I have to say what I have to say before I forget!

And… in the end, she said absolutely you have both ADHD and autism. As if it was the most obvious thing in the world! She is passing on my assessment to my doctor and her recommendations for medication to start with. I can speak with her again if I choose but my doctor can now prescribe the medication, after checking my heart etc.

I’m excited actually. There is a reason I am like this and I’m ok with that. But, hopefully medication can help me with my compulsiveness such as overspending and jumping in to things without thinking. I can now forgive myself for being a little bit fucked up! So, welcome to me!!!

I am still in the works trying to get our formal ADHD diagnoses. I am on to a psychiatrist who does phone appointments, isn’t terribly expensive, hasn’t got a big waiting list and takes reports from outside. Tick, tick, tick, tick. The problem is that, except for the waiting list and the phone appointments, none of that seems to be true!

I sent an email to them and explained the situation. I was told that it was in 2 visits. First one being $300 which would be the reports side of things. Second one being $800 being the formal diagnosis. First one the medicare rebate was to be $111 and for the second appointment the rebate was to be $445. I can cope with that. I let them know that I have reports so won’t need the first appointment. All good, get a referral from the doctor and send through the reports. Tell them I have 2 weeks off in November, I would like mine and Beth’s appointments during that time. Done.

Next I get an email from them saying that I have a special bundle price of $1100 , my appointments are set up in October, my rebate would be $262 for the bundle. I reply that they were not the rebates originally given, that I didn’t need the first appointment, the dates are wrong and it’s not a special bundle when it’s actually the same price it was originally!

The only responses I get are explaining that our reports aren’t comprehensive enough, nothing about the dates or the prices. I even screenshotted the original quote (I’m sure they hate me!) and had no response. I told them that I will be getting the rest of the things they need but if they can’t bother getting back to me re costings and dates then I shall go somewhere else.

Again, responded to how much it all was and that I need to pay the whole lot upfront, now my rebate is even less! WTF!

So, our social worker is now doing the comprehensive things asked for and I will be looking for another psychiatrist because clearly they aren’t really particularly professional.

I have decided that I am not going to pursue the autism diagnosis formally. I can see so much as far as ADHD is concerned, for both myself and Beth. And can see how medication and therapies can help us both. I can see the reasons why autism has been diagnosed but I don’t think it’s really necessary for me to have it formalised, though maybe down the track I will do so. I don’t feel that it interrupts my life the same way as ADHD does. Having the knowledge that I am on the spectrum is somewhat comforting though to be honest, there are things that frustrate the hell out of me about myself so I feel like I can give myself a bit of a break now. After all, we are our own worst enemies aren’t we!

so, I’ve decided to come back and continue writing. I spoke to Beth about it this morning and she said she doesn’t mind at all. Partially because we have a new development, or at least I have which Beth and I are both a tad excited about.

Drumroll please……….. I have now been diagnosed with autism also! And ADHD!

So, it’s a little different now. And I can start talking about my own discoveries about myself. Plus, I’ve really missed writing on here, I love it. And it has so many memories of the last 20 or so years.

I have been thinking for a while that I have ADHD. I spoke to Beth’s social worker about this because I have been wondering if Beth has it too. She was diagnosed with depression many moons ago and has been on anti depressants for quite a while but she’s still pretty miserable a lot of the time, and very anxious and has obsessional tendencies that rule our household. So I was keen on getting some new assessments done as she hasn’t had a specialist overseeing everything since she had a paediatrician. Rachel sent me some assessments for reports to take to a psychiatrist and we are currently doing the ones for Beth. One from my perspective and one from Beth’s. She did one this morning and I had to stop myself looking over her shoulder because she sees herself very differently than everybody else sees her!

I did mine with the social worker last week. My ADHD one came back as something like 99% which didn’t surprise me! I was a bit more surprised about the autism one, which was a last minute decision. Not as high as the ADHD but certainly there. I think though that behaviours that I considered were consistent with ADHD were actually more autistic behaviours. So it was quite the discovery! Reading a bit about the characteristics of women with autism it was quite obvious really! I have read them in the past and thought ‘that’s like me!’ but because Beth is fairly extreme in her behaviours I didn’t relate to a lot of it for her and I stopped looking them up. After all, she is what/who she is no matter what. So it’s interesting to read it in the context of me!

so…. I’ve made the big decision to stop writing my blog. While I love writing it there’s not as much to write about any more and the momentum sort of went when it dropped out for a while. I am also working a lot so don’t have the time that I once did to do updates.

I am also conscious that, as Beth is no longer a child, it’s not about autistic children any more and, as she’s not keen on writing any posts or even sharing much about her life with others I am not really in a position where I should be writing about what is going on in her life. If she doesn’t want to put it out there, I shouldn’t either.

I’d like to thank those who have stayed with me throughout the journey. I have absolutely loved writing it and it has been going for many years. My dad was keen on putting some of it into a book so hopefully there may be some way of saving the writings so that when they go off the air I can still have a record of them if I choose to do this down the track.

See you later alligator! xx

Sorry it’s been so long since I wrote! We had an issue with the computer which meant that I couldn’t access the internet and I’ve been so busy with life that I hadn’t had a chance to get it fixed up. My husband thinks I should just use my laptop but old habits die hard and I prefer to do it this way!

Things with Beth are slowly progressing, hopefully in the right direction! I feel like we are getting some plans in place. She has been going to her equine therapy which she really enjoys. She loves the horses of course and Michelle, the therapist, is so lovely and gentle and calm. Absolutely nothing like me!

I was worried that it might be a bit too ‘fluffy’ for want of a better word, as in that I wonder if she needs more hard core therapy to break these rules she has in her own head, her obsessions and her queen mentality of expecting everybody to do exactly as she wants. I have seen some subtle differences though. Last week she was eating her breakfast and I heard Paul coughing and I thought ‘here we go!’ She didn’t react so I made a point of saying how proud I am of her for not saying anything and she said ‘it’s always worse in the mornings’ which I have been saying for years! Mind you, she’s nagged him about it in the mornings since but if we can at least have that one time that she’s been a bit more understanding then it can repeat. I think recognising it and acknowledging it to her helps too, after all everybody likes to be told they’re doing a good job. And she’s very much about pleasing me.

Having said that, we have had a couple of doozies! Massive meltdowns that are extreme and that have me wanting to run away from home. Insisting that she has things planned with me is a running theme and drives me crazy.

In that vein though, we have (through Michelle, the equine therapist) been put on to a lovely lady called Rachel who is a social worker, who has made me see things in a different light. I’ll be working with her for a while I think. She is amazing and has insights that are so helpful. For example, she said that Beth’s perpetual need to control things is because of how unpredictable life is. Where I would try to punish by taking away Beth’s phone (horrible for all involved so hasn’t happened for a while) it was pointed out to me that her phone, tablet and tv being on is what she can control. She sits in her room with all on at once (my thoughts are also that maybe ADHD is present). Rachel said that Beth can only control a certain amount of things and she feels safe when she can control a situation. It made me realise that it is actually not a good thing to take away her safe item, much as it annoys me that she is on it so much. It also took me back to talks I have been to. Discussing things such as how so many people with autism work as accountants or engineers or other careers that are more about numbers than people. This is because numbers don’t make mistakes. They are not unpredictable. People are. So to be in an environment with words or numbers or games that you know what to do and it won’t be changed due to others choices or behaviours is safe.

Of course I know that compromise is also something that Beth needs to be able to do but a balance of both is also important. Lessening her anxieties which are so high will mean that she can cope with things when they’re not all her way. And giving her coping strategies when they don’t go her way. Rachel also suggested Beth see an occupational therapist to help with regulating her emotions. We are going to discuss maybe getting an ADHD assessment done. More for the fact that the medication she is on will not work effectively if she does in fact have ADHD and the medication for that is what she actually needs. She is on anti depressants but seems miserable much of the time. Which of course is heart breaking as a parent to see.

So I feel that we have some sort of plan in action finally. It’s exciting to know that there will hopefully be some improvement soon, and some enjoyment for life again for my girl!

Beth and I are going to see an equine therapist this afternoon. I had spoken with Beth about this a while back, then on the weekend when we were talking about her seeing a specialist to help with her obsession with Paul she asked about it. I had forgotten all about her to be honest! I spoke with Michelle (the therapist) on Monday and she sounded lovely. To start with I was worried that it might be a bit fluffy for our needs, as in not hard core enough because the behaviour is really out of control. But the more I spoke with her the more I thought that we could get something out of it.

One of the things we discussed was redirecting Beth’s obsession to a more positive thing. I’m not really sure what that could be mind you, obsessions themselves scare me. I remember when she was in Primary School she loved playing in the sandbox. She does have a bit of a thing with salt and she sometimes eats sand. I think it’s called pica? I didn’t realise she was doing it until I couldn’t flush one of her poos and saw that all the poo was washed away and it was sand in the bottom of the loo! Anyway, sorry, that’s another story. I was chatting with a friend who had a boy on the spectrum and she said that when her son was in early intervention they had a child obsessed with digging in the sand. They said they tried to redirect and his new obsession became anal exploration! His own of course! So sand doesn’t seem so bad after all in hindsight.

We also discussed learning about our bodies and how we feel when we do certain things. Michelle said for example that a horse might get startled and do that things with their lips while breathing out. Then the one next to them will often do the same thing in support. She would explain things through the animals doing this so as it’s not all directed at what Beth could do, so she thinks about how others calm themselves. I must say, I was really impressed with her knowledge of not only how the mind works, but how the body responds. As she can be paid with Beth’s NDIS funding I think it’s definitely worth a try.

Beth’s birthday was on Good Friday so we had a lovely long weekend. We went to the beach on Friday for a walk and a play in the water, it was beautiful weather. And we had lunch with Grandpa next door. Beth had a revolting meltdown there so her and I came home. The beach seemed to calm her down though. On Saturday Bill and his friend Jimmy took Beth to see Kung Fu Panda 4 and to the pancake parlour. I went and had a nice head and face massage! Then on Sunday I took Beth to have one too, and she loved it! Monday Paul took Beth to the zoo which was nice. Again, she wasn’t as bad when out. Apparently they’re moving heaps of animals to Werribee Zoo, they have a massive area as big as the whole zoo for the elephants which is exciting! I am wondering whether they will make the zoo itself a larger aquarium perhaps?

Yesterday was Autism Awareness Day. For years I’ve heard this after the event and it’s annoyed me that it was never even celebrated at her special needs high school, let alone any other organisations or carers groups. I messaged our managers and the people that run the social media group through my work and asked if we could wear blue as a tribute to those on the spectrum. They were very receptive and said they will add it to our calendar from now on, to go with Harmony Day and International Women’s Day amongst other important days. I was so touched, and even more so when I turned up and work and, one by one, my coworkers turned up wearing something blue. Not wanting to go too big I wore blue earrings, there were necklaces, headbands, scarves and hats. I nearly cried when I saw everybody, it means so much to me to have such a supportive team who are there for me on a day they know is incredibly special to me.

Wish us luck this afternoon! xx

I can’t believe that my big girl is turning 25! It’s her birthday on Friday. Trying to figure out things to get her. As usual there’s a few Disney things, some books, and she wanted a milkshake maker. We got her a nintendo switch for Christmas, I hoped it would give us an avenue for getting her games for presents but she’s barely touched it! She loves those ‘for dummies’ books. I got her one for Christmas that she asked for which was raising chickens for dummies. For her birthday she asked for raising goats. Neither of which we are going to do mind you! Though we did when she was little.

On my mind constantly at the moment is where she will live as we get older. If money wasn’t an issue it would be lovely to set up a farm style place which had retired / rejected animals, a retirement farm. Beth would love it. I would love it but I’ll be 60 in 2 years (Paul is already there) and it’s such an impractical thing for us. We really want to retire near the beach, near our friends and where Paul grew up. We could maybe move into a retirement village (over 50s) that had the facilities to look after us when we get older, therefore having the facilities to continue looking after Beth. But, I’ll be honest, I’m not sure I want her living with us forever.

I feel like such a bitch when I say this but it’s true. She’s really hard work and I’m getting tired. While I see all the improvements in my friends kids as they reach adulthood I really don’t see that happening. I know it’s not about comparisons. I’d just be happy to see Beth happy to be honest. She’s not a particularly happy person. She has this hang up about Paul and his coughing (and other noises). She thinks she is the boss. And she’s really hard to be around. The hard thing is though, she has such obsessions about things, it’s not like if she’s not living with us then it’ll stop, she’ll just fixate on something or somebody else. She had a huge meltdown on Sunday and it’s so draining.

I’ve booked her in with the farm stay that she enjoys, in the second week of my 2 week break. I was speaking to my friend Dom about it, about how I’ve strategically done it and I feel a combination of guilt and pure joy that I will have a break when I am at home. She said mum guilt is one of the hardest things!

She’s sick again this week which seems to happen near her birthday each year. So not even sure she’ll get to work tomorrow! She did manage to go out with one of our favourite carers – Tara, here’s a photo of the 2 together. Also one of Beth having a cuddle with a lizard at work. And one of Miss Coco, we went to visit Dom who has Coco’s mother visiting and due to have pups today! Coco’s sister was there too so they had a lovely play, as you can see by her wide maniacal smile!

I’ll leave you with a Beth funny (though it wasn’t funny at the time). On Sunday when having her meltdown, Bill and I were asking her to be quiet as we were trying to watch a movie. Beth said in her high pitched (when she’s being especially painful) voice ‘It’s my birthday week though, you have to treat me like a queen!’ Not sure who she got that from (hint, that would be me!)

I’ve just got off the phone to our plan managers enquiring about whether we can claim hypnotherapy for Beth. I had spoken to a lovely lady who does this, locally too, and has worked with people on the autism spectrum with varying degrees of success. We spoke about how Beth is so obsessed with Paul and his coughing and how it is disrupting our lives so much. She’s also not nice to Bridie for much of the time and it becomes who she is and what she does. The hypnotherapist was really lovely to speak to and said that it would be worthwhile having a session to see how it worked and if she was receptive to this. However, as she pointed out, when I did hypnotherapy to stop smoking, I really wanted to give up smoking. If Beth is being half hearted then it won’t work. She wants to need to change. We spoke about having two train tracks to choose from and how we at home can reiterate what is said in sessions such as ‘you used to choose that train track but we’re trying this one now’. I really like the idea but she is $250 per session. Which I don’t mind if I know it will work but I really don’t! The NDIS won’t fund unless she’s an accredited counsellor. I might look at other professionals who do hypnotherapy also. I know when I did it years ago, I went to a local doctor so I could claim it on medicare.

The plan manager gave me the name of a website called Kinora which is run by the NDIS and gives lists of service people who can help as well as having a forum so I’ll check that out.

We’ve had a quiet few weeks as Beth has been quite sick with a chest infection.  I’ve bitten the bullet and bought some vaporisers to see how they will go as we often get bad coughs and asthma. If they work I will get a proper one but they’re so expensive! Beth has been back out with Bridgehaven for her first day out in a while and seemed to really enjoy it! She went to the botanical gardens and the pier last Friday. They pick her up and drop her off which is very handy! She is also going out with the interchange girls once or twice a fortnight so we’re finally filling up her days.

I’ll leave you with a Beth funny. We were watching Gogglebox on Thursday and there was a show about gay men in Arabia. Beth often says things that we have to almost guess where it’s come from. So we’re watching away and Beth says ‘they’re gay, just like Arnold!’ OK, what???? ‘Arnold the pig. You know, from Green Acres?!’ Apparently I was supposed to know that she was talking about a show that was on around the time I was born. And that the pig was gay. Not sure where she got that from! x

So I have been doing grateful posts on and off on social media for a while. I think it’s easy to get bogged down with what is not great in our lives and don’t really appreciate the good. Some days it has been hard to feel grateful but there’s always been something, a sunny sky, the trains running on time, working with good friends. Today I am grateful for the friends I have made during my whole journey with Beth.

When Beth was really little I ran an autism support group. It was called HAGS in the hills which stands for Happy Autism Group Support. This is due to us all having been to depressing groups, we wanted it fairly lighthearted while still dealing with the issues as parents do when raising a young child, let alone a child with additional needs. I had Beth who had just started school, Bill as a kinder kid and Bridie as a toddler. I was tired and grumpy (still am at times to be honest!) and wanted some me time, so some friends and I started up our group. We still see each other a couple of times a year. I wanted it because when Beth was diagnosed, there wasn’t a whole lot of support out there. We became really close knit because we ‘got’ each other and could say what we had to without judgement.

One of these lovely ladies I’ll call Clemmy. Not her real name but a nickname that actually started of as Noodle, then Noods, and in it’s formal term – Clementine Noodle!  I don’t want to name her as I haven’t asked if I can. I noticed her daughter had started at a new service so asked about it and it turns out it’s nice and local to us. Beth and I went to see it today and safe to say loved it! It’s only been around for a few months so there is room for her to start – this Friday. They do various day programs and Fridays they go to different places each week so I thought it would be a great day to start. They’re going to the beach this week. She thought the place was great because they have 2 cats, a lizard and 9 guinea pigs. There weren’t many other participants there this morning, they were heading out to a disco so I’m not sure how she’ll go once she gets to know them all. As my regular readers know, Beth isn’t too keen on other people with a disability. They’re often too loud (pot, meet kettle) or want to do things that she doesn’t want to (how very dare they) but the reality is that most programs that she will be in will involve others with some sort of a disability. They’re planning all sorts of other things eventually so I suggested a few such as art or exercise (all things of course I’d like Beth to get back in to!) They’re big on healthy eating and exercise. And no phones! I love this idea. She said ok too but I’m sure there will be a bit of resistance. And when I say a bit, I mean a lot!

So… I’m very grateful for my little hags network that I still see on occasion but share information that helps us all. And really, that’s what we need in any community, support, friendship and sometimes a common denominator to get us through. Thanks Clementine Noodle, love Roberta Williams!

xx