About Cheltenham Autism Support Group
Cheltenham Autism Support is for families with children on the Autistic Spectrum run by Laura and Wayne. They provide the opportunity to meet with other parents and children affected by Autism. There is a soft play area, sensory room, dressing up, arts & crafts, lots of toys,and an outdoor play area. They also provide refreshments for both the adults and children.
“Receiving a diagnosis of Autistic Spectrum Disorder can be somewhat overwhelming for parents, carers and siblings of the affected child. Many families feel isolated and lack vital support and understanding of the condition. Cheltenham Autism Support Group aims to combat these issues and provide families with an emotional and practical support network, enabling them to tackle and understand the uniquely wonderful world of Autism.”
Whether you strongly suspect your children to be on the Autistic Spectrum or have a diagnosis why not visit to access a wealth of information, resources and support and/or share your experiences. You may be able to offer help to others. Or just to let your child/ren benefit from the facilities and interactions with other children in a supportive environment.
When Cheltenham Autism Support Group Meet Up
Cheltenham Autism Support Group meet up for their Rainbow Days Sessions meet every THURSDAY at Gardeners Lane Children’s Centre, Cheltenham, GL51 9JW between 3:15pm-5:15pm: Plus every THURSDAY during the school holidays/half term between 9:30-12:30am and alternate SATURDAYS 1pm-5pm.
They also meet once a month on SUNDAYS at Hop, Skip & Jump, Seven Springs, Cheltenham, GL52 9NG 10am-1pm – where there is also a Sensory Garden.
No need to book in an advanced just drop in and out when it is convenient to you. Find help with issues such as diagnosis, the new EHC plans, accessing Grants for the disabled, help with sleep, sensory issues, schooling, transport to school, diet, relationships, speech and language, and much much more.
Is there any point seeking a diagnosis of Asperger’s Syndrome as an adult?
I often wonder whether it is worth being assessed for whether I have Asperger’s Syndrome or not. But as an adult is there any point in seeking a diagnosis even if I did? It has been hard enough fighting for support for my children, never mind myself. Is there even much support out there for adults with Asperger’s Syndrome: For women even? Where would I begin and what would it achieve.
Why I even considered that I may have Asperger’s Syndrome
I first started to consider that I may have Asperger’s Syndrome when a seed was planted in my head when my oldest son was diagnosed. We were asked whether I had any traits as part of his diagnosis. I often have `meltdowns’ but have always just put them down to all the undealt with issues from my childhood. We did mention the fact that I cannot have hangers with nothing on them left in the wardrobe in between clothes. I hate change and really struggle with it. And of course I really struggle with relationships whether people want to admit it or not. I do not understand really the concept of things not being the way the rules say and just ignoring it. I know people do not like to be corrected and if I think hard about it I can stop myself from acting – but the thoughts are still there. I am sure there a lots more reasons that put me in the three areas of the triad but I try not to think about it too much as I feel like I am trying to make myself fit when I may not.
What would a diagnosis of Asperger’s Syndrome mean for me?
But a diagnosis (if I were) – well that wouldn’t change any of that would it. Possibly if I knew there was a cause would that make me feel any better about myself? And what if it was determined that I wasn’t on the Spectrum – would that make me feel bad that I have these behaviours with no reason – would the Asperger’s give me a reason to feel so different? Am I just hoping that it would give me a sense of belonging? Would there be any help I could access to help me fit in better? I mean I know that I am useless at small talk: I can barely even manage to say hello how are you on social media when I have something I want to discuss. I have made myself aware of this and try to at least apologise and say it afterwards – or is this normal? Am I actually just too self-absorbed?
If you have been diagnosed, or know of anyone who has, as an adult – then how did you know? And what did you do?
You may have found this page and discovered that I do not have Asperger’s Syndrome, or would like to talk to someone who has received a late diagnosis, therefore I can recommend that you visit Jax’s who has.
I would really appreciate any feedback on this topic please. x
Bullying is a problem for too many children, but a child on the Autistic Spectrum may be more at risk than their peers. They are also less likely to be able to make it stop, as they struggle with social communication. They might not even be able to tell those close to them. The National Autistic Society have written a guide on bullying for parents. In this post I talk about bullying and Asperger’s syndrome, as experienced by my son.
Victims of Bullying generally are either: Passive Targets – those with low self-esteem, shy, academic, on their own, smaller, weaker OR Pro-Active Targets – those with inappropriate behaviour, socially clumsy, perceived as irritating, attention-seeking and not knowing when to stop. Children on the autistic spectrum are more likely to be a target for bullies because they may be seen as different because they cannot always relate to the situation they are in – or communicate what is going on. Children with Asperger’s Syndrome are often perceived as being low in social status & friendship – having few friends to defend them. They are naive, gullible, & eccentric. They are neither cool, macho or popular and are perceived as ‘soft’
I remember my oldest son
crying upset that he did not want to go to school when he was only 7 years old. Now granted, he was at a new school, where he had to make new friends and the rest of the children had known each other a long time – but we’d moved a lot and he was used to this. He loved enjoyed school and has always worked hard, so it came as a bit of a shock. This actually was one of the first big moves to discovering that he has Asperger’s Syndrome.
I remember my son being confused as to why he was in trouble when one of the boys told him it was “a good idea” to bend another boy’s fingers back.
Those on the Autistic Spectrum are unable to distinguish between who are bullies and who are friends. They are unable to differentiate between friendly sparring and physical attacks.
Our son often kept complaining to the teacher that he had been hit so many times that they stopped taking him seriously – they said he complained as if he had been punched when someone so much as accidentally brushed passed him. Fortunately, the school was very supportive. I went in and explained the situation and they put things in place to help him. They made break times (when he was less supervised) more structured by introducing chess club. He also had a dinner lady buddy – that if he had ANY problems (even the seemingly most trivial) he could go and speak to them. They encouraged circle time sessions where children would focus on each other’s strengths.
I hear of so many children who end up being Home educated because of bullying. Do you have a story to share about bullying and ASD? I would especially like to hear any success stories.
Images maybe subject to copyright, used for illustration purposes only.
Our Teen with Aspergers is Driving
Only yesterday I was doing my A-levels whilst pregnant. So how is it today that the baby I was carrying is now the proud owner of a full driving license?! How did the time go so quickly? 7 years ago I would never have believed that this day would come. My son was struggling in so many areas, and had been newly diagnosed with Aspergers’ syndrome. Now we have so much hope for him and his future., driving is just the start. In fact now we are
struggling trying to get him to decide on Universities and courses! We have established that he does want to go, and has an end goal of what he wants to do – but that’s it. Actually looking at them and making a decision for himself – well that’s just another hurdle. But for today we celebrate that our teenage with Aspegers can drive.
Now for the next nightmare. Insurance – omg! It seems the more expensive car that is bought the cheaper the insurance – but is that wise? And will he know what to do (socially) when out on his own? I guess it is natural for all mothers to worry (Aspergers or not). And actually the sensible lad in him is very reassuring. What about the other idiots on the road though – eek. Today someone walked across the road (fully) then (without looking) ran back again in front of me. I think everyone around was shocked, and horrified. Me I was just glad I pressed the brakes fast enough. The poor guy who was nearly hit couldn’t say sorry enough, I was just shocked speechless. My 11 year old (who was in the front) just said that he hoped that never happened to his brother. But I am sure my oldest will be fine. And when I have got over worrying about him, I am sure it will be his little brother’s turn!
I wanted to write a post about the benefits of having a teenager with Asperger’s Syndrome. My teenage son was diagnosed with Asperger’s Syndrome when he was ten years old. He is my first born and none of my other children have reached their teenage years yet. But when I hear people talk about teenagers it all sounds a bit alien to me, and I think that his Asperger’s Syndrome make dealing with a teenager easier.
Teenager Obsessions – or interests
When making a diagnosis on whether someone has Asperger’s Syndrome or not it may be considered whether they have any “obsessions,” but I prefer to call them interests. One of the benefits of having a teenager with Asperger’s Syndrome is that you can easily buy for things for them. Their interests are usually pretty rigid and unlikely to change quickly. This makes planning for birthdays easier. For example, my son really likes Minecraft and so I knew he would be delighted when I ordered him Minecraft cakes and clothing for his 16th birthday. His interests also make a good bargaining tool – if I say do X, then you can do Y (related to his interest) he will generally do it. The teenager with Asperger’s Syndrome may have interests in common with those younger than their peer group, which is not always a bad thing for their parents.
Those with Asperger’s Syndrome may be more likely to really engage with a task for a long period of time. Again this is largely to do with the their interest. I think this has really helped my teenager stay focused as he knows what he wants (to be a computer games programmer). The teenager with Asperger’s syndrome is more likely to be internally motivated, because they do things on their terms, what they want to do. This is really useful now my son is at an age when thinking about University, as he is less likely to need rewards and praise in return for independent learning.
Taking things literally
A teenager with Asperger’s Syndrome may take everything as black or white, this makes things simple and uncomplicated. For a parent this is amazing – drugs are wrong; smoking is wrong; I could go on but I may get embarrassing. Needless to say my son generally avoids behaviours that are considered dangerous/illegal, things he has been told that he should not do. I have a very thoughtful teenage son who listens to what I say and takes it on board. An example of this is how he does not waste money and is now paying for his driving lessons.
Lack of Social Awareness
Of course a lack of social awareness is generally a bad thing but there are positives to it too. A benefit for a teenager with Asperger’s Syndrome is that they are less likely to get hurt. Not being able to read the signs of so-called friends letting them down, I think can be a good thing (although very painful for the parent). One of the biggest fears I have is one of my children successfully committing suicide and I think without the teenage-friend-wars, or succumb to peer pressure, therefore it is hopefully less likely to happen.
This lack of social awareness means that the teenager with Asperger’s Syndrome may take the lead, without worrying that someone else may want to do it. They KNOW that they are knowledgeable about something and put themselves forward. My son often thinks he is right (and often is) and will not be afraid to vocalise it (note this is not always the case with everything, but I am focusing on the positive). An example of this is the fact that my son has a great memory, this is pretty beneficial when it comes to remembering routes. He has great accuracy too and I am pretty sure he did this for the orientation part of his Duke of Edinburgh.
With little understanding of social norms those with Asperger’s Syndrome are good at contributing without wasting time on small talk. They have no hidden agenda and may be straight to the point, especially with issues that others are worried about bringing up, or when considering the unpopular. They are not over-emotional and can see things logically that others may not. This makes it easier for them to prioritise and stay focused – especially beneficial for their career. The teenager with Asperger’s Syndrome may take things on face value – including people. This means that they are less likely to judge people based on society’s constraints (gender/age/appearance stereotypes for example).
It may be the case that the teenager with Asperger’s Syndrome does not know how to behave in social situations, and so tries to learn the “right” way to behave. Therefore becoming more socially desirable than someone who acts from emotion. I know that if my son has offered to make me a cup of tea, or asks if I am okay – then he’s put even more thought into it than those it comes to naturally.
Rigid Routines – or Being Organised
I would like to think about the routines as the teenager with Asperger’s Syndrome being reliable and organised (although I am aware that my son’s routines aren’t as rigid as some/or used to be). What this means is I know when he will get up in the morning and he is always ready for school on time. With British Summer Time and the clocks going forwards I have really struggled to get into the new routine (and so has my Sensory Seeker that does not understand the clock changes). However, to my teenager with Asperger’s Syndrome the time is just the time, same as it has always been.
Cannot see the bigger picture
Not being able to see the bigger picture means that the benefit for a teenager with Asperger’s Syndrome is that they can focus their attention to detail. This means that they may pick up on things that others may miss. Concentrating on these details can make them a bit of a perfectionist, but you know that they will do a good job.
Hopefully some of these characteristics are personality, and his younger (normal trait) brother will be just the same. From everything I hear about teenagers though, I will not hold my breath.
Do you have teenagers? What are they like? Do they have Asperger’s Syndrome or not?
Babylab Birbeck STAARS Project – Siblings of those diagnosed with Autistic Spectrum disorder and/or ADHD.
When you have a child who has been diagnosed on the Autistic Spectrum and/or ADHD (or many other disabilities), for me, you cannot help but wonder whether their siblings will have it too. You may know how hard it is to fight for the diagnoses, the intervention, the support, and so you may want to start the process sooner rather than later. When my oldest son was finally diagnosed as having Aspergers Syndrome, at 10 years old, we saw what a marvellous difference the right way of dealing with him made, and this highlighted to me the importance of early intervention.
At that time we never had any worries about his brother having it too, as their differences were what alerted us to the fact that there was something more than just him being naughty. You see that is the fight we had come up against, him being told he was evil and that it was down to rubbish parenting. The boys who have been born since the diagnosis, we always found ourselves watching, and questioning whether they had it too. It was at two years old that I was convinced that our youngest son needed more support than his peers, and was determined to get all the help I could for him. I feel I have been really lucky and we have had a lot of advice and support when we needed it. Saying that he has only recently been diagnosed (as NOT having Autism) and now we await a blood test to determine if there are other underlying genetic conditions (he is now almost 5 years old).
I would have done all that I could (and have done) to ensure that he gets the right diagnosis, as I feel that will lead to the right help and support which can make such a huge impact on his future. Therefore, I was really interested to hear about BASIS (British Autism Study of Infant Siblings) a study at the Babylab, Birbeck, University of London, which began 8 years ago. This is major new research into the early detection of Autism, which has lead on to the STAARS Project (Studying Autism and ADHD Risk in Siblings), lead by Professor Mark Johnson and his team.
Babylab Birbeck STAARS Project – The link between Autism and ADHD
It has been found that there are processes in common for both ASD and ADHD; STAARS Project is the first of its kind in the World to study the two together. Studies suggest that between 25-83% of people with Autism also show symptoms of ADHD. It is known that 40% of children with ASD meet the criteria for ADHD – and this is now allowed on the DSM-V. With ASD usually being diagnosed at around ages 2-3 years old but ADHD being rarely diagnosed until school age and more commonly it is ages 6, 7, 8 or even secondary school).
The STAARS project looks at siblings who already have a diagnosis of ASD and/or ADHD as they are more ‘at risk’ as there is up to a 20% chance of having a sibling who will also have a diagnosis. These children will be studied using non-invasive methods. At the end of the 3 years children will be assessed for symptoms of autism and ADHD by a team led by Professor Tony Charman, examining the earlier data. It will be discussed if it is felt that they also have ASD and/or ADHD (if they have not already being diagnosed).
Babylab Birbeck STAARS Project – Participants needed
The study is very scientific and they are always considering extraneous variables (such as sensory seeking and avoiding, now that they have been added to the DSM-V for the diagnosis of Autism. They are looking for 100 participants with a child already diagnosed with ASD and 100 participants with a sibling already diagnosed with ADHD in the UK, with further sampling from Europe, and combining with data in North America.
The sibling to be studied would be 10 months or under, with a commitment of coming in possibly 6 times over 3 years. There would be help with developing social interaction/play and to develop parenting relations in the lab. I know myself how hard it is to play with someone who lacks attention and very little interest in what we are meant to be playing.
Babylab Birbeck STAARS Project Methods Used
- Face recognition
- Optimal imaging (NIRS – changes in the blood)
- Eye Tracking
- EEG (small voltage changes in the nerves)
- Cheek swab.
- Heart rate and perspiration.
Babylab Birbeck STAARS Project The Parent’s Point of View
At the launch of the STAARS Project I got to meet one of the parents of the study Charlotte Warner, she is very supportive of the study and could not emphasis enough how important she felt it was, how well she’d been treated and would recommend others to participate. Charlotte is now involved in The Rise School which aims to “educate and support children and young people with autism aged 4-19 to access a broad and challenging curriculum alongside mainstream pupils.”
Babylab Birbeck A Friend’s Account
Of course if you personally know someone who has been involved in something you are more likely to trust what they say so I am going to leave you with the account of one of my friend’s opinions of her experience of the study. She wishes to remain anonymous but is happy to answer questions that may arise.
She heard about the Babylab from her local NAS, already having a son diagnosed on the spectrum and another with diagnosed traits (though she believes he has ASD). After looking on their website, she e-mailed them and luckily rang them up (they’d had trouble with their e-mails). It took around 45 minutes to answer questions on the phone. They arranged a visit to go to the Babylab ASAP.
They explained that everything was non-invasive and that if the baby signalled that they wanted a break then they would have one. The baby had to wear a romper suit and hated it. But the staff listened to the mother and allowed her to take it off the baby as soon as possible (which proved successful and settled her crying). When the mother sensed that the baby did not like a particular room, or felt it was best to stay in a room or change rooms, then she was listened to. During the visit the baby watched TV (with an eye tracker) and was required to play games. The mother filled in a sensory questionnaire about her baby, a sleep diary and other questionnaires about the baby’s development so far.
Both mother and baby were made to feel at ease and their needs taken into account. They were the only ones with their team. Everything was catered for – free nappies and wipes, and everything was paid for – travel (by train), hotel (as was too far to commute) and food. The baby received a t-shirt for attending the workshop. The baby was 6 months and a week at the time and has been asked to return again at 10 months old.
Getting involved with the STAARS PROJECT
Families are needed for further research, If you have a child diagnosed with Autism and/or ADHD, and are pregnant, or have a baby under 10 months old then contact:
Janice 0207 079 0761
The STAARS Project Research Team
*Professor Mark Johnson – is an MRC Scientist, Fellow of the British Academy, and Director of the Centre for Brain and Cognitive Development at Birbeck, University of London. Professor Johnson is an internationally renowed expert in the field of developmetal cognitive neuroscience.
* Professor Tony Charman – who co-leads the study, is Chair in Clinical Child Psychology at the institute of Psychiatry, King’s College London, and is an expert on early autism.
* Dr Emily Jones – winner of this year’s L’Oreal Women in Science Award, is co-ordinating the European-wide component of the STAARS project.
* Kim Davies – British Autism Study of Infant Siblings (BASIS) Coordinator, works closely with the families involved in the project.
The STAARS Project Funding
Funded by the UK Medical Research Council, the European Union and the British Autism Study of Infant Sibling (BASIS) fundling led by Autistica.
I do not take responsibility for the accuracy of this information, please contact the Babylab if you wish to ensure that details are 100% correct.
Last week we had the big appointment, the next step in the Autism assessment. As you would expect we still do not really have any answers. The paediatrician took me and my husband into one room whilst two speech and language therapists went into another room to play with our little Sensory Seeker. It was checked several times that we were clear and okay with the fact that they would be video recording his behaviour.
At the beginning of the Autism assessment it was made clear what we and they hoped would come out of the appointment. I was clear in the fact that I believe him to have high functioning Autism and would like a diagnosis if that were the case; and if not to discover what it was.
Autism Assessment – Pregnancy, Birth and the First 2 years
During the Autism assessment the paediatrician asked a lot of questions about the pregnancy and first two years of his life. It makes me feel pretty bad because it is all a bit of a blur and to be honest he cried a lot, I found it hard to play with him (he still has limited attention span), and can’t really remember much mother-baby communication (apart from a smacking of his lips kind of clucking sound when he wanted feeding).
The paediatrician could not have been lovelier for the duration of the Autism assessment, asking how I’d coped with 4 boys (especially since I had been breastfeeding both of the youngest 2 at the same time). I did remember how empowered I had felt when our little Sensory Seeker was a baby, especially when I did not give up and let people tell me that my breastfeeding was the cause of his weight loss.
She reassured us me that his behaviour was not down to parenting, and nor did she believe that he was suffering from a developmental delay (although I’m sure I would prefer this to be the case so he could catch up I just know it not to be true). That they had enough experience to be unpick the complicated nature of his behaviour and see which boxes he ticks, and categories he falls into. That actually, mainly due to his language developmental delay, he may end up diagnosed as something now, and then a few more years down the line reassessed and re-diagnosed. That the important thing was to establish what help would suit him best right now. The thing is I know this Autism assessment will question his imaginative play and language delay coupled with just how bright he can be – which conflicts an Autism and Aspergers diagnosis. He may still remain undiagnosed.
Autism Assessment – Different view points
There’s always a worry that people do not see what we see – and I am sure I can say we here and it’s not just me. So it was reassuring that at the end she went and spoke to the language therapists, who took part in the Autism assessment, they described him (and the way he plays) exactly as we just had. What that all means I do not know.
I know the paediatrician has arranged a meeting with the school next month – so there will not be any answers until after then. But things are coming along well. His one to one support is looking after him well, and I can see he is popular among some of the children. I saw a couple of boys doing this special ‘tickle’ thing our boy does yesterday to him.
Every morning we go in and we look at his visual book together. His one to one shows him the picture of what he is going to do and then he finds it in his book and puts it on the next page, then the next picture, then the next – until he can see what he is doing for the whole day. His one to one has copies of the pictures and together they pin them to a wall in the book corner. As the day goes on, and the activities are done, she takes them away. This means he can see what is left to come, and sort of a judge of how much of the day is left. I take the book home and we can then ‘discuss’ what he has done at home. I’m finding he is getting more and more patient with it all, a clear sign his attention span is developing too.