Motherhood With Executive Functioning Issues

One of the biggest issues I come across in my experience of parenting with Aspergers is executive functioning issues. Like a lot of people across the neuro diverse spectrum, whether autistic or not, executive functioning issues are constant in my life. I wouldn’t be able to cope day to day without making To Do lists on my phone. Despite my very best intentions, my once neat correspondence file is now struggling to hold its contents and my bedside drawer is full of correspondence going back a few months. I struggle to explain to people that this is not down to laziness as I know, from an outside perspective, it can often seem that way. My issue is not a lack of willing to organise my correspondence, nor a lack of knowledge about exactly what it is I need to do. It’s more what I term a mental block.

I often experience this mental block when it comes to organising my life. I’ll know exactly what I need to do but thinking about what needs to be done becomes overwhelming and then my mind just shuts down and I find myself unable to do anything. Tasks seem absolutely gigantic in my head even when I know logically that I could tackle them easily. I start thinking about having to decide which correspondence can be binned and which needs to be kept  or which old item of clothing could go to the charity shop and which one I would still like to wear and then I become mentally paralysed with indecision. I am a very indecisive person as I’ve mentioned on here previously and, perhaps ironically, I find it easier to make big decisions such as where to live or what job to take than small decisions like whether an appointment letter from an appointment I’ve already attended still needs to be kept or not. I can become very frustrated with myself because I know I’m procrastinating but I just can’t get past that mental block. I can totally understand how people end up in hoarding situations as I’m sure, if I was single and lived alone, I would  have a hoarding issue because I hate the responsibility of throwing things away and whether I might make a wrong decision that I then can’t put right.

Then there’s the more everyday executive functioning issues that I experience. Stuff like forgetting to take the laundry out of the machine or locking myself out of the house! Luckily I haven’t had a massive slip up with the kids due to these issues so far and I’m hoping I never will. But parenting with these issues is by no means easy. I try to remind myself that my children will see me making mistakes and know that this makes me human and be encouraged by me admitting my issues. I am most certainly no “super mum” but I try to be the best I can be for my children as that’s all I can be. My hope is that they will learn from me that it’s OK to have flaws and it’s OK to need help sometimes. If I could teach them just one thing, I’d like to teach them that acceptance is power and that knowing the areas in which you struggle enables you to do something about them. It might take me a lot longer than the average person but I WILL get round to organising that correspondence and sorting through all my old belongings and I’ll continue to be the best mother I can be, executive functioning issues or not!

I would welcome advice from other parents with executive functioning issues about strategies they have personally found helpful to help make their lives more organised. Any suggestions would be most welcome.

Have a great rest of the week everyone wherever you are in the world. As for me, I’m off to take my laundry out of the machine!

Overcoming Anxiety To Advocate For Your Children

Like a lot of people on the spectrum, I battle with anxiety, in particular social anxiety. I can write eloquently and tackle subjects in depth but, offline when talking to people, particularly people in positions of authority, I tend to freeze, stutter or just end up going off on tangents because my anxiety provides a constant running commentary and my racing thoughts sometimes come cascading out of my mouth. However, since having my first child almost 3 years ago, I’ve had to force myself to talk to professionals in various capacities in order to get the best for my children.

That’s not to say I find it any easier than when I have to speak to them regarding myself. I still prefer to correspond via email when possible as that gives me time to organise my thoughts and lay out exactly what needs to be said without the risk of forgetting something in the moment but sometimes correspondence via email is just not possible. I guess the difference when speaking to them on my children’s behalf is that I care about my children’s well-being more than I do my own. I’ve been willing in the past to avoid making doctors appointments because I’ve not wanted to speak to the doctor and so just hoped that whatever was ailing me would clear up on its own but I’m not willing to take that risk with my children. So I have to take a few deep breaths and then try and convey my concerns in a way that the professionals understand.

One circumstance that really made me realise just how far I’ve come in dealing with my anxiety in order to advocate for the well-being of my children was when I was pregnant with my youngest. After having pre eclampsia with my first born, I was wary that it might happen again and so tested my readings at home with a home blood pressure machine which was the same model they used in the hospital.  Everything was fine until I hit 32 weeks and started getting high readings accompanied with headaches. A few times, I rang the hospital and was advised to come in. At the hospital, my readings would be normal and the doctors would conclude my headaches were most likely sinus related due to the season (this was last winter) and the high readings at home were most likely a product of anxiety. My bloods would also come back normal so we were all reassured for a while and then the same thing would happen again. At 36 weeks, I had a consultant appointment and mentioned that I was still getting daily headaches. She was worried and sent me down to be seen in the Antenatal Day Unit and, this time, although my BP readings were still normal, my blood results came back as abnormal and I was admitted overnight for monitoring. Further monitoring and testing revealed a liver condition, obstetric cholestasis, which I was put on medication for until delivery. If that had been me pre children, despite it being an ongoing health concern, I’d have accepted the first explanation that it was seasonal and anxiety related, felt bad for supposedly wasting the doctors time and suffered in silence. This time, I was fighting for the health of my unborn child and that was the single most important thing. Whilst I never developed full pre eclampsia, the continued monitoring for that concern revealed another condition that could also threaten my baby’s health.

Overall I would definitely say that becoming a mother has forced me to confront my anxiety in order to advocate for my children. It’s taken me a while to accept that I do know them best and I should go with my instinct as it’s often right. I may not always be able to say the right words but I’ll try, try and try again to get the best outcomes for my children.

Parenthood and Sensory Overload

Disclaimer-while I will be writing about feeling overwhelmed by sensory stimuli, I want it to be known that I would not swap being a mother for anything and that I love my children more than anything. I know I shouldn’t have to justify this but this is the Internet and some people have some very judgemental ideas.

One area in which I feel being on the autistic spectrum impacts on my parenting is that of my ability to cope with multiple sensory stimuli. I have seen many parents, including lots who are not on the autistic spectrum, make reference to feeling overwhelmed by their children’s noise and general clutter and, in a way, I find this rather reassuring that it’s not just me who sometimes wants to shut the world out for an hour or two. However I do feel that being on the spectrum makes this more regular of an occurrence in my case.

Let me describe exactly what I mean by sensory overload as I know that the way in which it is experienced can differ from person to person. To me, the 2 main triggers are crying/toddler tantrums and being used as a climbing frame. I usually find myself getting irritable which I then resent myself for as I feel that this is not a maternal way to feel. Then I have a strong instinct, almost at a primal level, to escape from the situation. If my husband is around, I will take the opportunity to sit in the bathroom or in our bedroom for up to half an hour until I feel ready to return. When my husband is not around, I usually practice breathing exercises in order to keep myself grounded and still able to respond to my children’s needs. Being in sensory overload leaves my whole body feeling tense and usually leaves me with a headache afterwards. Sometimes I can physically feel the tension leaving my body once the tantrum stops. There is definitely a physical component to sensory overload that I think most people struggle to understand unless they’ve experienced it themselves.

I am somewhat lucky in that I have had many years of practice in dealing with sensory overload and so I can now regulate the way I am feeling in a productive way most of the time. I find myself stimming a lot at these times in order to regulate my senses and restore equilibrium but I am usually able to avoid behaviours that I used to display when in sensory overload such as digging my nails into my knuckles or pulling at my hair. This comes with years of practice and I do not want it to come across as if it’s my opinion that people who cope with sensory overload in different ways to me are handling it wrongly because it’s so personal to each individual. All I’m pointing out is what helps me in those situations.

Another thing I find difficult is that I can no longer have my headphones in while walking around and going about my daily life because I tend to completely zone out when I have them in and this is very dangerous when I’m in charge of a pushchair! Anyone who knows me in real life knows how much I love music and, indeed, in my former workplace, I was always noted as the lady who always walked the few minutes to and from work with her headphones in, merrily bouncing along. For me, music is a huge emotional release and also a form of escapism. But I have had to accept that music now comes second as my children’s safety outdoors is more important. I know that and appreciate that but part of me does miss my headphones and sometimes I’ll offer to go to the shop alone leaving the boys with my husband so that I can have my headphones in and just switch off for a while.

I do find that my ability, or lack thereof, to cope with the general noise of children, is closely related to tiredness. When I have had a decent amount of sleep (5 hours plus), I feel a lot more relaxed and am able to cope with a lot more before I reach that point of feeling overloaded. If I haven’t had much sleep, then I reach that point a lot quicker, sometimes within an hour of both children being up. I am blessed in that both of my boys are pretty good sleepers so I do get that ability to “recharge”, as it were, most nights despite having middle of the night wake ups to feed (which is what I was doing just before writing this!)

Parenthood can be tough at times and sensory overload is just one circumstance that makes it tough but, as I mentioned at the beginning of this post, experiencing this response to certain stimuli does not lessen my love for my children and it doesn’t make me a bad parent. I find being able to identify my triggers really helpful and I hope that, in time, I will be able to explain to my children that their mummy is not perfect but that she tries her best and approaches each day with renewed energy and passion and that’s all any of us can do as parents. My hope is that they will learn from me that nobody is infallible but that the key is in always trying your best. Mistakes will be made along the way but I have no regrets and I definitely feel that being a mother has enriched my life and changed me for the better.

Before I sign off, I would like to wish all my readers who celebrate it a Happy Easter. It will be a strange one this year with the restrictions in place meaning families can’t meet up and no church services are taking place but I hope you all have a good Easter regardless.

Life Update

Hello everyone. It’s been almost 3 years since I last posted on here, which I can’t quite believe! Life seems to have gone by so quickly and I do feel bad that I’ve neglected this blog. I still get the occasional email alerting me to the fact that somebody has liked one of my posts or commented and it really touches me that, despite being AWOL for so long, people still find this blog and are comforted by it or learn from it.

Now the majority of the world is in enforced isolation/quarantine/lockdown/whatever you prefer to call it as a result of COVID 19, I thought I would use this time well and try and get back to writing my blog posts on a regular basis. Firstly though, I need to give another update on my life as a lot has changed in almost 3 years!

I now have 2 gorgeous little boys-my oldest will be 3 in May and my youngest turns 3 months this Thursday April 2nd. My last pregnancy was very complicated health wise for me and, now I have my 2 wonderful children, I think that’s it for us! I am currently on maternity leave and getting used to having 2 young children. In common with lots of mothers, whether on the spectrum or not, I’m often wracked by “mum guilt”, particularly now that I have 2 children, constantly wondering whether I’m giving each of them enough 1:1 attention or stimulating them enough. I often lie in bed at night wondering if my best is good enough for them. Motherhood is definitely an emotional roller coaster. But, in times where I feel my worries are becoming overwhelming, I try to remember that, as long as my boys grow up to be compassionate and caring individuals, I’ve got motherhood right!

As I haven’t posted on here for so long, I thought I’d ask my readers what they’d like me to post about on here. I’d like my blog to mainly be focused on parenting with Aspergers, purely because I covered a lot of autism topics before I had my children and now want to incorporate motherhood into the themes of my blog posts. But, beyond that remit, I need ideas on what in particular regarding parenting with Aspergers my readers would like to see on here.

Stay safe everybody! Looking forward to hearing some ideas from you all!

Update on my life

Hello all. I know it’s been a few months since I updated this blog (you will see the reason for this later on in this post) but I am pleasantly surprised that people are still coming to this page every day despite months of neglect on my part.

My life has changed a lot since I last posted. My beautiful son was born on the 10th of May. I never understood how sudden and instant a love you get for your children until the moment I heard him cry. I spend most of my waking hours simply taking him in and looking in wonder at the lovely baby I spent 9 months carrying. With his arrival comes a whole host of new experiences and anxieties. There are the immediate concerns: Is he feeling unwell? What is he trying to tell me? Is this nasal congestion normal or a sign of an impending chest infection? Am I making enough milk for him? Then there’s the long term concerns: Will he have a happy childhood? Will he feel able to talk to me and trust me when he’s older? Will he know how much I love him? Motherhood is daunting but it’s also so rewarding and I genuinely can’t imagine life without him now.

In terms of motherhood with Aspergers, I feel that I have already surpassed expectations in this area. I am coping a lot better than I thought I would when I was still pregnant. I am learning from my son every day and I feel we have a good bond. I feel that he now trusts me to take care of his needs and that he can sense how much love I have for him. I have signed up to cooking lessons which will help me learn how to cook nutritious meals ready for weaning and also to a baby massage class which should be very relaxing for both of us.

I am lucky in being so well supported in this journey. My wonderful husband and mother have been absolutely amazing since I gave birth and I wouldn’t be anywhere near as confident as I am if I was learning it all on my own. For all of my readers out there, whether parents or not, please accept any support offered to you. It really does make so much difference.

I aim to update this blog as much as possible when my motherly duties allow. Thank you so much for all your continued support. I wish you all the very best in life and I will continue to check in here as much as I can.

Happy Easter to all!

Firstly, I must apologise for my neglect of this blog over the past few months. My husband and I have both been very busy moving into a flat suitable for our growing family and sorting out the nursery and baby’s furniture. My pregnancy has also recently run into a couple of potential complications, one of which I have been cleared for and one of which I am still undergoing testing and monitoring for. With only a month or so left to go, it’s really beginning to feel real now! Soon we will be a family of 3 and I will have a son or daughter who is completely dependent on me. I can’t wait but it’s nerve wracking too.

I would like to wish all of my readers a Happy Easter if they celebrate it. I hope the Easter celebrations have been all you hoped for. I’ve had a quiet Easter this year but really enjoyed the Easter Sunday church service we attended yesterday.

Of course April also marks Autism Awareness Month. I have seen a lot of activity on the online groups I belong to and I have enjoyed reading all the blog posts about life on the spectrum that people have been writing to raise Autism Awareness and to promote Autism Acceptance. As mentioned before, life preparing for our new arrival has meant that my own blogging has been limited but, as always, I hope that my blog has been helpful to my readers and I have noticed a couple of new readers comment on my older posts since the beginning of April, pointing out that what I describe sounds exactly like them. It always makes me happy when I receive comments like this as it reaffirms the fact that there are people out there who rely on my blog to help them make sense of the world and help them realise that they are not alone in the way they interpret the world, something that despite all the facts, figures and statistics, most people on the spectrum feel on a regular basis. As long as this blog is available to the public, I feel that I am doing my bit for Autism Awareness/Autism Acceptance and, as I move on to the new life chapter of parenthood, I will have so many more experiences to write about and hopefully receive help from mothers already in my position and, given time, also be of help to other mothers on the spectrum.

I wish all of my readers the best. Look after yourselves and I will be back with another blog post soon, I promise!

Happy New Year!

I know it’s been a couple of months since my last blog post and I have a lot of updating to do!

Firstly, for those of you who don’t know me personally, my husband and I are expecting our first baby which is due on the 18th of May next year. We found out I was pregnant very early on but had it confirmed by an ultrasound scan on the 3rd of November. We had our Foetal Anatomy scan yesterday and all is looking well. I have to say that, although I cannot wait for us to start our journey as parents, pregnancy has elevated my anxiety levels hugely. I never knew it was possible to be as anxious as I have been throughout the whole process. I have read, though, that it is common in a lot of first time mothers to have such feelings, even those who aren’t on the spectrum. I know that parenthood on the spectrum can bring all sorts of challenges but I am looking forward to taking them on and proving everyone who believes that we can’t be good parents wrong. My blog posts will certainly take on a different tone once I’m writing about parenting! In the meantime, if anybody can offer any advice on parenting with Aspergers, I would love to hear it.

Directly related to our growing family size, we are also in the process of buying our first home together. 2016 has not been a quiet year for us by any means but, overall, it’s been fantastic. As 2017 awaits us, I would like to take this opportunity to wish everyone all the best for their lives in the New Year and also to thank my followers and readers for their continued support over the last 3 years even though my blogging is nowhere near as frequent as it used to be. 2017 will bring new challenges and we will finally get to meet our baby, a unique individual with so much love to give! Personally, I can’t wait!

30 things I have learned from 30 years living with Aspergers

Hello to all my readers. I apologise for not blogging as regularly recently-settling into life as a married woman means I am very busy a lot of the time. I also turned 30 this past Monday so have been busy celebrating that. To coincide with turning 30, I thought I would do a blog post detailing 30 things I have learned from 30 years living with Aspergers. As I always say, this list may not be applicable to every person with the diagnosis as we are all individuals-this is based purely on my personal experience. It’s intended to be a bit of fun so hope everyone takes it in the spirit that’s intended.

1. Living with Aspergers is an emotional roller coaster-so many highs and lows, but the best thing is just to accept your life for what it is. Trying to improve your life is never a bad thing but work with what you’ve got to do that, rather than just hoping one day the Aspergers won’t be there.

2. Your friends and relatives can set their watch by your little routines.

3. Talking of watches, you are always early to every appointment and social engagement you have as you hate being late for anything and so take great lengths to ensure that doesn’t happen. (I know some people on the spectrum can struggle with time keeping due to executive functioning issues-I’m not one of them).

4. Social rules keep changing and, as an adult, it’s a lot harder to get away with making social mistakes than it was when you were a kid.

5. These days, a lot of people think they know what Aspergers entails (largely through media exposure) but have the wrong impression or idea when it comes to you personally. Try not to be offended-instead use the opportunity to raise awareness and educate them into what Aspergers is like for you.

6. You may as well save some time and not even take a menu in a restaurant as you know exactly what you are going to have there but you end up glancing through the menu every time anyway only to choose exactly the same meal you’ve chosen for the last 10 years every time you eat at this restaurant.

7. A lot of people, including a worrying number of professionals, seem to believe that, once you turn 18, your condition suddenly disappears and you go from being a child who needs a lot of support to being an adult who needs no support at all despite having a whole different set of issues to cope with. This is very frustrating and has ended up being very harmful towards some people on the spectrum, particularly with PIP being declined in a lot of cases. This is one aspect of ignorance that I find so hard to change because so many people still think of autism as a childhood condition.

8. Traits which often lead to bullying in your school years, such as being hard working and eager to please, are well respected in the workplace. (That said, the employment statistics for autistic adults are dire-I have come across an extremely high number of people on the spectrum who are perfectly capable of working but are not given the chance which really upsets me because we, as a community, deserve more. I have been lucky enough to find a career in an industry I thrive in but I know that a lot of other people on the spectrum are not as fortunate. Hopefully, in time, things will change).

9. You seem to have a special affinity with animals.

10. You have odd little habits that most people don’t understand but that you rely on to feel secure. One of mine is watching TV with the subtitles on. I don’t need to have them on as my hearing is fine but, for the past 20 years, I have needed them on to make me feel secure. It’s really hard to explain but I know that a lot of other people with Aspergers have similar sorts of comforts.

11. Clothing was never designed with us in mind. Labels feel like sandpaper against your skin and certain textures lead to frenzied itching (wool is the main one for me). Most people on the spectrum dress for comfort, not style, hence why most of us are never going to win any style awards!

12. Certain sensations that don’t seem to phase other people are such an issue for you that you do anything to avoid them. One chief example for me is static electricity. The thought of receiving a static shock is so distressing to me that I will roll my coat over my hand before I touch the handrail of an escalator or open a car door because these have given me static shocks in the past. I will also avoid unfolding any item of clothing that’s just come out of the dryer and has static properties. I recently received a static shock from an escalator in a busy London railway station and spent 10 minutes looking for a lift so I wouldn’t have to step on the escalator again (there wasn’t one so I ended up having to go back on the escalator after a couple of “false starts” because I was so worried about getting another static shock!)

13. Everyone wants you on their quiz team at the pub quiz because you’re great at knowing the small details that most other people overlook because they find them boring.

14. You get so fed up when people accuse you of not having empathy because you are actually highly sensitive and emotional.

15. You don’t understand how anybody could find clubbing a fun night out as it’s far too overwhelming for your senses. You’d rather a nice meal in a curry house any day!

16. You love a bit of repetition! Whether it’s a certain episode or scene from your favourite TV show or a certain song, you have no qualms with watching/listening to it 500 times in a row!

17. You realise who your true friends are when you’re in meltdown mode in front of them.

18. You are always accused of being too open but you don’t know any other way to be.

19. Your inner thermostat never matches with the weather. It can be the middle of summer and you feel the need to wear a coat or it could be the middle of winter and you get your shorts and T shirt out!

20. Your family, friends, teachers and work colleagues recognise your handwriting anywhere because it’s so unique, to put it politely!

21. You’ve always seen clapping or jumping as a legitimate expression of excitement or happiness and don’t understand why so many people can’t understand this!

22. Textures of food items are more of an issue than how they taste when it comes to whether you can eat them without gagging.

23. You don’t understand why people see obsessions as a bad thing when they have brought you so much happiness over the years.

24. It’s hard to try new things but, once you do, you continually amaze yourself with how you can adapt to your new circumstances and how strong you are.

25. A lot of people have low expectations for you and you are continually proving people wrong.

26. You are so disorganised and continually misplace or lose your personal possessions but seem to be able to find other people’s lost possessions with ease.

27. You wonder constantly how you managed to get to adulthood with such non existent observation skills.

28. You know that the friends who stick by you are special and you would do anything for them. We’re not the easiest people to be friends with a lot of the time so those who remain friends with us are life’s decent people.

29. A lot of people won’t ever understand you or have the will to try-those who do understand us are the ones we need to keep in our lives. It makes life so much easier than constantly trying to explain yourself to someone who will never understand you.

30. Finally, despite all the negatives, you wouldn’t change who you are for the world because you have a great life.

My thoughts on people claiming children can grow out of autism

One opinion I have come across rather a lot lately in autism groups online is that children can grow out of their autism once they become teenagers or young adults. This opinion is mainly held by parents who claim that their children have grown out of their autism. The most famous recent example of this was Toni Braxton claiming that her 13 year old son Diezel no longer displays symptoms of autism (my IPad is funny about hyperlinks but Google Toni Braxton autistic son and you’ll get several articles about it come up). However, I have also come across a couple of adults online who claim to have grown out of their autism and say that, if they were to go through the diagnostic process today, they would not get a diagnosis of any autistic spectrum condition.

Let me clear something up before we go any further-autism can not be grown out of. It is a neurological condition which means our brains are hard wired in a certain way that gives rise to the symptoms of autism. Every individual is different but, while outward manifestations of the conditions on the autism spectrum will differ from person to person, the neurological make up is similar. I do maintain that people who do not have the associated severe learning disabilities that can be co morbid with autism can learn social skills the same way that someone without autism can learn regular skills. This is how I learned the social skills I have-through years of hard work and many mistakes. This does not mean that I have grown out of my Aspergers though. It doesn’t take much for me to forget these social skills-if I am tired, stressed, anxious or not feeling well, my brain cannot access these as they are not natural to me and so people who haven’t seen that side of me before where I am unable to communicate verbally or blurt something out impulsively find it hard to match that person with the person they normally know me as. I am constantly working at 100% to be socially acceptable and the irony with that is that, when you work so hard to fit in with the world, people can be very unforgiving when you do have a bad day and suddenly, as the quote goes, “my autism starts showing”. It worries me that these children who have apparently grown out of their autism are putting themselves under immense pressure to fit in socially and, as such, are not given enough recognition that they do still struggle and, from experience, this can lead to a vicious cycle of low self esteem and self loathing because it feels like they can never truly be themselves. I feel a lot happier when I have an outlet for my stress, such as stimming. After a long day at work, I usually stim for at least 30 minutes uninterrupted and, after that, I feel calm enough to attempt to sleep. I know some autistic people who have been shamed out of stimming, either by relatives or by professionals such as teachers, and feel like they have no outlet for the stress that comes from having to constantly monitor your behaviour in order to fit in as best as you can with society.

I also maintain that people usually grow into their autism rather than grow out of it. Autism is a lifelong condition and, like any lifelong condition, over the years, you learn to live with it and you learn coping strategies. Many people with autism who are sensitive to noise, for example, really struggle as young children and can have very public meltdowns due to over stimulation but, by the time they become adults, they have learned which steps to take to avoid over stimulation such as headphones or ear defenders or ordering shopping online rather than going to busy supermarkets. People who have severe learning disbilities alongside their autism also learn, over time, how to regulate the auditory input they receive from the environment. A lot of autistic people make their own unique vocalisations which often serve to block out other auditory input by making that noise the loudest input they are receiving. We need to respect other people’s coping strategies. As long as it is doing us no harm, why force them to stop, creating more anxiety and distress? If someone flaps their hands to calm themselves down after holding it together all day, respect that and don’t try to stop them from doing it. I have never seen personally why hand flapping is considered so socially unacceptable by some. I can think of so many things that I would consider socially unacceptable but wider society deems perfectly fine but they can’t tolerate seeing someone flapping their hands. It’s one thing I really don’t get.

People with autism also benefit from extensive support (where available). This support can enable them to fulfil their potential but it doesn’t mean they are no longer autistic. I benefited hugely from the social skills sessions I attended in secondary school but I am still autistic. Yes, as a child, in home videos, I came across as very noticeably autistic (lots of hand clapping and running around in circles) and now, as an adult, I just come across as shy and socially awkward to most people (unless they work in the autism field) until you get to know me a bit better but that’s down to years of hard work. Another thing I find ironic is that, with the recent Government cuts, a lot of autistic children in both mainstream and special schools are having their support reduced precisely because they have benefited so much from that same support. It just doesn’t make sense to me.

I find it interesting that most people believe that the people who have grown out of their autism are the extroverts. Toni Braxton claims that her son is now a “social butterfly”. Whilst there are a lot of people with autism who do present as socially awkward, conversely some of the most charming and sociable people I know are autistic. The media has done a lot of damage by portraying autism as introversion. Yes, a lot of people on the spectrum are introverts but there are lots of extroverts on the spectrum too and also a lot of introverts who are not autistic. It is not impossible for people with autism to make friends or to keep them. It is stereotypes like this that can do so much damage to our community. I have read accounts from women who have gone for a diagnostic assessment only to be told that they cannot be autistic because they made eye contact with the psychiatrist who was assessing them or because they are married. One man was told that he cannot be autistic because he works full time as a highly paid professional. Prejudice is still very much in existence when it comes to autism. There are still far too many professionals who believe that autism is a childhood condition and that, if you weren’t diagnosed before your 18th birthday, you’re obviously not autistic. People whose autism is not picked up until adulthood often have mental health issues such as depression from working so hard to fit in and never feeling like they can truly be themselves.

Lastly, misdiagnosis can and does happen although it is nowhere near as common as some people would have you believe (mainly the people who believe autism is just an excuse for poor parenting but that’s a whole other topic!) I once came across someone on an autism forum that had never experienced a meltdown or shutdown, never had obsessions, was very adept at reading body language and social cues, had no sensory issues, did not have any urges to stim and strongly felt that they had been misdiagnosed which we all agreed with but I think he was a very rare case. If anyone truly feels they have a diagnosis of an autism spectrum condition but do not have any of the symptoms any more, I would suggest speaking to your Doctor or the person who diagnosed you as you were most likely misdiagnosed. Although I have changed a lot since my initial diagnosis, I know that I would still receive the same diagnosis today if I went for a reassessment because my brain hasn’t changed since my last assessment. Well actually I would now be given a diagnosis of Autistic Spectrum Disorder Level 1 given that Aspergers has now been absorbed into the spectrum as a whole which, in my opinion, was the best thing that could have happened but that’s for another day!

So Toni Braxton’s son, unless misdiagnosed in the first place, is still autistic. Given that I don’t think she ever accepted her son’s condition in the first place (she was quoted as saying that his autism was a punishment from God for a previous abortion-it’s pretty distressing to know that some people still consider autism or other disabilities as punishments), I think her eagerness to assert that his autism has now vanished is related to that. More than likely, Diezel, like most teenagers on the spectrum, has devised his own coping strategies and grown into his autism. I am sure he will grow into a fine young man who hopefully accepts his condition and works with it to achieve his full potential.

 

My thoughts on the autism and vaccination debate

Firstly, apologies for not having posted in a while. I am getting married next Saturday and my mind has been pretty occupied with that. I’ve also been very busy at work recently. As a consequence, my blog has been a little neglected but I decided it was definitely due an update.

This is a topic I have debated very seriously over whether to cover in this blog. I tend to shy away from confrontation and this topic is one which tends to lend itself to confrontation. However, I do believe it is a topic that needs discussion and I am going to do my best to write as articulate a post as I can surrounding this issue.

I have been a member of several Aspergers groups on Facebook ever since I first joined back in 2007. Every couple of weeks, someone will post an article claiming that autism and vaccines, in particular the MMR vaccine, are linked and that autism is essentially vaccine damage. Since the release of the documentary film Vaxxed, which features the now discredited research by Doctor Wakefield on the links between the MMR vaccine and autism, these links to articles have become a lot more frequent.

Now let me start off by clarifying that I do believe that there are some children and indeed some adults who are sensitive to vaccinations. Everybody’s immune system is individual and what might cause simply a sore arm in one person can lead to fevers and indeed lasting physical or neurological issues, such as what has been happening in some cases with the cervical cancer vaccine. However, I do not believe that vaccines and autism are linked for two primary reasons.

Firstly, it is now pretty much universally accepted that autism has a significant genetic component. Environmental triggers are almost certainly implicated too but these almost certainly happen in utero. Autism is a neurological condition. It affects the brain’s wiring. Our brains have always been autistic-an autistic person is born autistic and dies autistic. It’s a cradle to grave condition. It may appear obvious at different stages of a person’s life-someone with classic autism may start displaying stereotypical autistic behaviours at the age of 18 months whereas people on the Aspergers end of the spectrum can go undetected without a diagnosis well into adulthood. However, pretty much every parent of someone on the spectrum I have come across, whether through my work or my interactions in the autistic community online, realised very early on that their baby was different. I had my vision checked when I was still in hospital as my mother was concerned that I may be blind because I wasn’t focusing on her face. Proof that my aversion to eye contact was present from birth. I have lost count of the number of posts online I have read from relieved parents who have finally received a long awaited and fought for diagnosis where they mention that they were aware from when their child was just weeks old that there was something different about them. The crucial thing is that these subtle signs of autism are present before the age at which the MMR is given. There are also autistic people who have never been vaccinated.

Secondly autism has always been around. Diagnosis rates are higher now but that’s mainly because the medical profession are becoming so much more aware of the spectrum. Until relatively recently, most people with severe learning disabilities who were also autistic did not have their autism recognised because it was assumed that their learning disabilities were the cause of any other symptoms they were displaying. On the other end of the spectrum, people with Aspergers were often just viewed as pedantic geeks or nerds whose problems with social interactions were simply a result of being so academically minded. In the past 20 or so years, it has been recognised that autism encompasses a far wider spectrum than previously thought and people on both ends of the spectrum who may not have received a diagnosis 20 years ago are now receiving them. That doesn’t mean that the increase is down to the MMR vaccine particularly as a lot of adults receiving late diagnoses did not have the MMR as children because it hadn’t been invented back then.

There is a rare condition called Childhood Disintegrative Disorder which is considered by many to be on the autistic spectrum. This differs from the other autistic conditions because, in this condition, there is a period of regression and loss of skills at the age of around 18 months to 2 years. I believe that most cases where the MMR vaccine is blamed for autism are probably cases of CDD. Because the MMR is given at the same age, it is easy to assume that the 2 are linked but the regression would have taken place anyway even without the vaccine. Another important thing to take into account is that the social skills impacted by autism are only seen to be impaired when it comes to the age where other children use them, in play with toys and play with other children. Again, this usually coincides with the age where the MMR vaccine is given.

I can understand the need by parents to have a firm answer as to what has caused their child’s autism. From their point of view, they have just been given a diagnosis which is massive and has lifelong consequences. To then be told that the professionals can’t pinpoint why your child is autistic must be devastating. Humans love answers and there isn’t any with autism. However, this doesn’t mean that the vaccine is to blame. The danger of course is that a significant number of people are so scared that vaccines might cause autism that they refuse to vaccinate their children. Consider how this makes people on the spectrum feel. To say that you would rather your child catch an illness that can be fatal rather than risk autism is basically saying that autism is a fate worse than death, which is not true and deeply hurtful to everyone living with autism on a daily basis. Refusing vaccination also has a significant impact on immunosuppressed individuals for whom a relatively minor illness can cause serious complications that could be fatal.

Of course, whether or not to vaccinate your child is entirely the decision of the parent. I would just hate to think that fear of autism was behind refusal of vaccinations which can have serious consequences. Autism is a hard condition to live with but it’s not something that people should fear to such an extent that they are willing to put their kid’s lives at risk. What we should really be asking is why is autism seen as a fate worse than death and what should we, as a society, be doing to change that? I’ll leave you all with that thought.