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Here are some suggested organisations that offer expert advice on special needs.

High Functioning Autism / Aspergers and the future.
24

Trying016 · 20/04/2022 16:14

Hi everyone,

I am very new to this. My DS (7) is currently being assessed for autism and we have been told by professionals that in the past he would have (more than likely) been on the pathway to an Aspergers diagnosis. I know some people don't like the terms LFA / HFA, but I find it really difficult not to distinguish in some ways between the struggles of my DS and other children, for instance my friends DS who has 'classic' autism (non-verbal, severe learning difficulties, special school). I am worried about the future for my DS, looking to hear others experiences and what interventions anyone can suggest...

A little about my DS - his main impairment seems to be in social communication. He struggles to explain his feelings, understand the feelings of others and maintain conversation. Sometimes he will be asked questions and not respond, or respond with a one word answers. He can be quite silly at times, saying random things at odd times or in response to questions, or invading personal space. He has very little in terms of the other triads of impairment - very slight sensory issues which don't paricularly impact his day to day life (sometimes covers ears to loud noises like a hand dryer, can be sensitive to bad smells), zero meltdowns, very resilient, not bothered about routine changes or surprises / new experiences. Happy to be spontaneous! Last week we had a spur-of-the-moment sleepover and he wasn't bothered at all. He is excelling academically, although sometimes will take himself off to work alone or gets distracted easily.

He is also quite independent in that he showers and cleans himself (including washing hair), dresses himself, gets shoes on, brushes hair, brushes teeth, tidies his room, does homework independently, can get himself a drink / snack, use the microwave safely to reheat something, do own seat beat, toilet himself, keep himself entertained, give directions on somewhere he has been before, cross the road safely. I'm sure there are more but these are what I can think of from the top of my head...

I would like to hear how other parents with children similar to my DS faired in later life, teenage hood and later adult life? What supports were in place to help you (or your DC) be the best you could possibly be?

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Rhubarblin · 22/04/2022 12:23

Hi, some people in the UK will get a level with their autism now they've done away with Aspergers, PDD etc. They either are diagnosed with just ASD or ASD Level 1/2/3, which relates to their level of support needs.

Part of the criteria for autism diagnosis though does mean they need to have "restricted, repetitive patterns of behaviour, interests or activities" in order to meet the threshold for a diagnosis. There is also Social Communication Disorder and Developmental Language Disorder though. The fact that your DS is so independent already is a really good sign for his future progression though, regardless of diagnosis.

I hope you get some replies from someone with a grown up son/daughter who was similar as a child, as they will not doubt be more helpful than me (my ND DD is only 4 and still pending exact diagnosis!)

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Robinni · 23/04/2022 00:03

The fact that your DS is so independent and capable bodes very well. Many people who are autistic go on to have happy and fulfilling lives, they can achieve qualifications, work, get married and have families. Some excel in their field of work due to their autism.

I think rather than focus in on the positives you need to focus in on the negatives so that you can help improve the areas in which he struggles.

For us our son (2yrs younger) struggles with routine changes, sensory issues, he has zero stranger danger and can be inappropriate, and he has issues with fine and gross motor - falls a lot and has issues writing which impedes his progress at school.

So we are working on flexibility, extra school work, extra sport, extra social time, sensory exposure so that he can improve and the deficits specific to him are gradually reduced.

We aren’t expecting Bill Gates, though he and Steve Jobs are rumoured to have had aspergers. We are aiming that our son has a good shot at education, and are realistic that he may need support into adulthood, possibly even towards 30. But that is ok, many neurotypicals are like that anyway!!!

other examples of people with aspergers/autism confirmed: Chris Packham, Dan Ackroyd, Daryl Hannah, Christine McGuinness, Melanie Sykes.

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Trying016 · 23/04/2022 09:50

Thank you both for your replies.

I'm not so sure about, 'restricted, repetitive patterns of behaviour, interests or activities'. He has about 7 core 'interests', things he likes to talk about and play with the most. He's also happy to watch films and TV shows and do activities out of those interests. I wouldn't say his behaviour is particularly repetitive, although I have noticed recently what I think may be stims, hopping on one leg and some echolalia. Although again, these are minor and don't happen in all circumstances. Really, from a home perspective, it just seems to be a lack of social skills. School also says he gets distracted easily and can find it hard to focus on task or follow instructions, although as he is academically bright he still achieves well. School has also noted that he struggles with routine change, but I really don't find this at home. I know we parents make allowances for our children, but to be honest, I am quite a disorganised / spur-of-the-moment / spontaneous person, we often just decide what to do on the day, we will often just have people come over randomly or we will decide to go to a friends or have a random sleepover. He doesn't find this a struggle at all or have meltdowns.

I think what would benefit DS the most would be social skills training / lessons, but I don't even know where to start, and when I google it there doesn't really seem to be many people providing this service. School are currently doing some assessments with him, then I'm toying with the idea of private diagnosis, as the waiting list in this area is around 3 years😲

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Robinni · 23/04/2022 11:33

Repetitive behaviour can even be things like wanting to watch the same film or tv show repeatedly. Always having a certain sequence of play or character he has to be. Always sitting at the same chair, driving the same way to school, having to put clothes on in a certain order. As well as the various obsessions they get, which usually lead to them steering all conversation and as much activity as possible towards their interests. It’s more subtle with aspergers.

We have the same issues with DS attention and focus. He was referred for an adhd assessment following asd assessment as they flagged it. Get a time tracker, break tasks up, when doing homework let him get up and move around every 15 mins or so. Instructions need to be repeated several times and in different ways in order that they sink in.

There are a lot more transitions and routine changes in school than at home and the environment is so much more stimulating so symptoms will be more pronounced. Particularly if he is an only child and has little disruption to his agenda at home.

Again the meltdowns etc are much more subtle with aspergers. We had disruption to DS routine 2wks as another family member away. The first week fine (and we had prepared him for it), second week absolute mess, he didn’t throw himself on the ground or anything but he was temperamental, stroppy, sleep was disturbed, didn’t eat as well, was extremely difficult at hairdresser as this wasn’t in the normal routine. All of these things in isolation could be written off as minimal but when they are put together collectively you can see the problem. The struggle may not be obvious at the time, it may be evident in struggles at school over the next week or other things that are subtle at home. Sometimes our son is fine with spur of the moment, if it fits with what he likes to do and people he knows. Things like holiday or new experiences/people require preparation and he can be very excitable.

Get the private diagnosis, they will give recommendations and as you’re on the nhs waiting list the report can be sent through and then you go straight to intervention. Intervention needs to happen as early as possible for the best possible long term outcome. The school will only be able to provide limited support without a diagnosis so it’s important to get on the ball.

Once you have the diagnosis you can apply for DLA. For us this covered the cost of the private assessment, has payed for sensory toys, after schools and holiday schemes to increase his social time, books so we can read about it and we anticipate having to have other private sessions etc in future.

You need to do the social skills training at home every day, modelling behaviour and coaching him through various scenarios (social stories). Then have play dates and repetition until he learns appropriate behaviour.

High Functioning Autism / Aspergers and the future.
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AReallyUsefulEngine · 23/04/2022 11:56

Restricted, repetitive patterns of behaviour, interests or activities includes sensory differences.

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AReallyUsefulEngine · 23/04/2022 11:58

Posted before I had finished. The school can help with social skills and emotional literacy support. OT and SALT can help too.

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Robinni · 23/04/2022 12:05

  • you can actually apply for the DLA as soon as any impairment by contrast to another child is evident.

    For is we waited as initially it was unclear as to whether the impact was due to lockdown or disability. In hindsight I wish we had gone ahead as he missed out on two years worth.
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Springblossom2022 · 24/04/2022 22:22

Not sure if this will be helpful or not, but my partner was diagnosed with Asperger's (would now be autism) when he was young. He's now in a very senior position in his career and doing incredibly well. I suspect I am autistic too. We both got 1st class honours degrees at university. We are both grateful to be where we are on the spectrum and be able to have done the things we wanted to when growing up (going to uni etc). The only support either of us had from age 10+ was just the usual family support. We both had families that encouraged our passions and weren't pushy about education, just encouraged us to do our best. For us at least, a supportive family that understood us and championed our achievements was fundamental.

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Robinni · 24/04/2022 23:23

@Springblossom2022 completely agree with this, having a supportive family is key! Also a 1st class graduate. Maybe this is an aspergers thing?!

However, for me personally I wish I had had the condition known about and the appropriate supports in school. I didn’t have any disability provision until Uni. It meant I wasn’t on a level playing field with my peers and had to work harder and sacrifice other things.

Did you find you had social issues in your childhood/teens? Prefer 1:1 rather than group situations?

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Nevillethefathamster · 25/04/2022 14:54

@Trying016 I could have written your post in many ways. Your DS sounds quite similar to mine. My DS is 8 & we are going through the diagnosis process at the moment. His main problem is social communication. He has never made friends really, which is heartbreaking. Will make silly noises when spoken to and doesn't respond 'appropriately' when in conversation, especially if it's an unexpected encounter- it's like we have to rehearse social situations again and again before they happen. But doing well academically at school and not many other issues like sensory problems or anything. He's not very resilient though and does have emotional outbursts in response to very small (to me, clearly not to him) problems.
At school he has a weekly meet up with a TA who chats through social stories etc with him which we are very grateful for. Would be interested to hear from others about what extra support in mainstream schools people have found helpful though.
I do worry a lot about the future too..just want him to grow up happy, being able to function socially with friends/colleagues/ people generally. He's a bright boy in many ways but I fear his social issues may hold him back.
Sorry for the long post- this is my first ever Mumsnet post. I have lurked on the Sen boards for a while and have often found it helpful to hear others' experiences and when I read this thread it resonated a lot with me so I thought I would post a reply.

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AReallyUsefulEngine · 25/04/2022 17:15

Nevillethefathamster The school could provide more support e.g. emotional literacy support, social skills groups, nurture group, lego therapy, drawing and talking… If you feel DS has needs cannot, or are not, be met using the normal school resources you can apply for an EHCP, with an EHCP things like SALT and OT would help.

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Springblossom2022 · 25/04/2022 18:17

@Robinni That's a good point actually, I wish I'd known I was autistic from a young age. I'm 24 and have worked in schools with autistic children and never realised until last year that I'm actually autistic myself. If I'd known I don't think I'd have been so hard on myself throughout my childhood and even to this day.

I had social issues in the sense that I was bullied by other children, but in all honesty I would say I was good at socialising. I could hold conversations really well from a young age, and adapt my conversation style depending on who I was taking to. The issue was mainly other children just being a bit mean because I was different. I got on a lot better with adults and to this day many of my friends are 20+ years older than me. I liked group situations, but again other children usually always turned on me and picked on me and I could never understand any. I always felt different but couldn't put my finger on it!

But definitely, when I have children, if they are autistic I will let them know and help them understand who they are from a young age. I think understanding yourself is key!

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Nevillethefathamster · 25/04/2022 18:45

@AReallyUsefulEngine thank you, that is really useful.

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Trying016 · 25/04/2022 21:18

I think it's really encouraging that our DS's are bright academically and are doing well on the whole. How is your son in 1-1 settings? My DS copes fine with playdates 1-1 and small group settings, it seems to be when he is at school that he struggles. I have heard lots of feedback from other parents about how caring and kind DS is (he gives daisies to the girls, for example) but he doesn't particularly have a secure / best friend. My DS also makes silly noises when spoken to e.g. animal noises! I do tell him though - if people are speaking to you - it is annoying if you respond in a silly way. I'm not sure if this is the right way to approach this or not, but I do feel that he needs to 'learn' what is appropriate? DS knows his responses are 'silly', he acknowledges this, but it seems to be an automatic response... I'm really hoping that with him being bright and academic, he can learn over time what might not come to him naturally. All I care about ultimately is that he is happy but he does need to learn some functional social skills, I worry about how he will cope as a teenager / adult. My DS is resilient, but school has mentioned that he can become disheartened and disengaged, not something we really find at home, but I guess that's the different between 1-1 and 30-1... DS is very easy to manage as he is so independent, he doesn't need a lot of time / attention, his main struggles are social communication and instructions often need to be repeated (I was exactly the same, and even now instructions often need to be broken down/repeated, or I will forget what I was meant to be doing and need to really think hard to remind myself or get someone else to remind me 😅

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Trying016 · 25/04/2022 21:19

@Nevillethefathamster The above post was in response to yours 😊

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Nevillethefathamster · 25/04/2022 22:01

@Trying016 Their traits do sound very similar. My DS is fine 1:1 if we invite someone round (arranging that can be a struggle as he finds it hard to identify people he is friendly with) but once they are here he usually plays ok with them. But as you say, in larger groups he really struggles. So, for example, he doesn't know how to 'join' a game which is underway so will stand & watch at the side or, as is usual, he'll just play alone. He'd never join in on a conversation with peers at school either- we try to give him lots of interesting experiences which he enjoys but he'd never share them in discussion with other people, even if the topic came up. He does the animal noises too...or a particular word that he repeats a lot.
Up until a year or so ago I was unsure if I was just reading too much into what might be 'typical' shy child behaviour (I can be a bit of an anxious mum!) but a number of things to do with his social communication have been flagged up by school, leading to his referral.
Where are you with the assessment process, if you don't mind me asking? We are a year in...have had the first hospital appointment with a paediatrician, now on waitlist for the full autism diagnosis which will probably be at least another year or so. It's different in different areas I imagine. I found previous posters' comments about other possible support e.g. speech & language therapy very helpful too & will be looking into some of this too.

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Trying016 · 25/04/2022 22:28

@Nevillethefathamster That's interesting... my DS is an extrovert and will always try to make conversation and join in, it's just like something is 'off' about him socially that the other children can pick up on, he just doesn't quite 'get' it. He gets on much better with adults and younger children, he just can't seem to quite grasp his own age group.

I've bought a couple of social skills books that I am going to go through with DS. It was school that first flagged the issues, to be honest I'd always assumed DS would 'grow out of it' (I was similar as a child), and there are so many traits of ASD that don't fit for him that it only crossed my mind fleetingly. The school have said his traits are very 'mild'. In a lot of ways, he is so much easier than other children his age. The wait for ASD diagnosis in this area is 3 years, by which point DS will be 10, and if he does need further support / intervention as he gets older, I'd rather he had the diagnosis in place ready. I've started the process for a private ASD diagnosis, which should mean he has his diagnosis before the end of the school year, fingers crossed!

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Nevillethefathamster · 26/04/2022 09:37

That's great that you're doing the private assessment. We are keen to get a decision on any diagnosis by the start of secondary at the latest.
It's really hard isn't it, the traits vary so wildly & with DS being our eldest we were never sure what was 'typical' for his age group. We've relied on the school's advice and flagging of stuff up in many cases (I sound like a terrible mother don't I!). Like you, we had always wondered if the social skills might have been something he'd grow into as he got older, but it's clear now that it's a lot more than that. For a while we wondered if he just needed to find 'his crowd' in order to make proper friendships- time will tell on that I guess. We are so keen for him to find a small group of peers that he can relate to and get along with but it just hasn't happened yet...

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Nevillethefathamster · 26/04/2022 09:37

That's great that you're doing the private assessment. We are keen to get a decision on any diagnosis by the start of secondary at the latest.
It's really hard isn't it, the traits vary so wildly & with DS being our eldest we were never sure what was 'typical' for his age group. We've relied on the school's advice and flagging of stuff up in many cases (I sound like a terrible mother don't I!). Like you, we had always wondered if the social skills might have been something he'd grow into as he got older, but it's clear now that it's a lot more than that. For a while we wondered if he just needed to find 'his crowd' in order to make proper friendships- time will tell on that I guess. We are so keen for him to find a small group of peers that he can relate to and get along with but it just hasn't happened yet...

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Nevillethefathamster · 26/04/2022 09:43

That's great that you're doing the private assessment. We are keen to get a decision on any diagnosis by the start of secondary at the latest.
It's really hard isn't it, the traits vary so wildly & with DS being our eldest we were never sure what was 'typical' for his age group. We've relied on the school's advice and flagging of stuff up in many cases (I sound like a terrible mother don't I!). Like you, we had always wondered if the social skills might have been something he'd grow into as he got older, but it's clear now that it's a lot more than that. For a while we wondered if he just needed to find 'his crowd' in order to make proper friendships- time will tell on that I guess. We are so keen for him to find a small group of peers that he can relate to and get along with but it just hasn't happened yet...

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Nevillethefathamster · 26/04/2022 09:55

That's great that you're doing the private assessment. We are keen to get a decision on any diagnosis by the start of secondary at the latest.
It's really hard isn't it, the traits vary so wildly & with DS being our eldest we were never sure what was 'typical' for his age group. We've relied on the school's advice and flagging of stuff up in many cases (I sound like a terrible mother don't I!). Like you, we had always wondered if the social skills might have been something he'd grow into as he got older, but it's clear now that it's a lot more than that. For a while we wondered if he just needed to find 'his crowd' in order to make proper friendships- time will tell on that I guess. We are so keen for him to find a small group of peers that he can relate to and get along with but it just hasn't happened yet...

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Nevillethefathamster · 26/04/2022 12:36

So sorry that posted so many times! I am very new to this 😳

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Robinni · 29/04/2022 10:33

Springblossom2022 · 25/04/2022 18:17

@Robinni That's a good point actually, I wish I'd known I was autistic from a young age. I'm 24 and have worked in schools with autistic children and never realised until last year that I'm actually autistic myself. If I'd known I don't think I'd have been so hard on myself throughout my childhood and even to this day.

I had social issues in the sense that I was bullied by other children, but in all honesty I would say I was good at socialising. I could hold conversations really well from a young age, and adapt my conversation style depending on who I was taking to. The issue was mainly other children just being a bit mean because I was different. I got on a lot better with adults and to this day many of my friends are 20+ years older than me. I liked group situations, but again other children usually always turned on me and picked on me and I could never understand any. I always felt different but couldn't put my finger on it!

But definitely, when I have children, if they are autistic I will let them know and help them understand who they are from a young age. I think understanding yourself is key!

@Springblossom2022 been meaning to reply to this for a while!

When you said “If I'd known I don't think I'd have been so hard on myself throughout my childhood and even to this day” it really resonated with me.

I think not having the diagnosis I got this really negative self image and as high functioning autistics can be quite perfectionistic this was really hard.

It was things like not being able to complete academic tasks quickly, or anything really, and difficulty participating in sports as my coordination and concentration was poor.

I was smart, but spent a lot of time thinking “how does everyone else have so much more free time… how do they find it so easy?” And I put this down to fault with myself - as many others did - because I had no idea I had a health issue. Like you I felt “different” and preferred the company of adults.

Bullied quite a bit and school not fun. However, I really enjoyed socialising and still do - provided I can recharge after. Girls can be great at analysing social situations and as you say adapting their conversation styles. I still do this and have a sort of system according to whomever it is Im speaking to as to what bank of info I have to draw from. I have several small groups of friends each related to things I’m interested in lol which suits and I get less overwhelmed with that. My hen do/wedding drew them all together - I had a very eclectic group of women from 18 - 50 years old!

While disability was evident and I received support in my 20s, I have only now been officially diagnosed, following my DS diagnosis… it was like looking in the mirror. I feel like there was a lot of time wasted and negative experiences that could have been avoided. However, it gave me an advantage in helping my son, realising how important it is to know who you are and to have support and protection.

I tell him every day how important he is and how loved he is and not to mind what people say. He is very confident and assured of himself which is lovely to see.

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KnottyAuty · 05/05/2022 22:49

Make sure to choose a secondary school with an autism provision or unit/expertise. You may need to get an EHCP in order to choose the school based on need rather than distance from your house - alternatively use the Social & Medical criteria in the school admissions code if it exists in your area. Be very careful about the transition support to secondary and through Y7 & Y8. I used to feel something of a fraud having got DS his diagnosis and EHCP until secondary and the demands just go through the roof. Ideally get a school with an in-house counsellor for mental health. Make sure you find out from other SEN parents that the school are happy to adapt the behaviour policy to accomodate your DS and that he will not be punished for being disorganised (if that happens). Be alert to signs of anxiety and share this information with the school. Learn about emotional school avoidance behaviour and flag this with the school if you see it as early as possible. It's difficult to know how they will get on as many with ASD will be fine at school and then uni, but others seem to reach a limit on their way through the mainstream education system and get very anxious. If that happens you want to be somewhere with expertise in autism and good pastoral support.

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