Suspect aspergers in 10 year old daughter (and now myself!) - need all the advice I can get

[aspies]

Hi,

I suspect my 10 year old daughter has Asperger's, albeit high-functioning. Many signs have been there over the years, and I even remember the arm-flapping/stimming at 2-3 years old that I've since seen mentioned. It's really come to a head the last 12 months, as I feel the gap between neurotypical peers and her is becoming larger. I'm concerned for high school and the teen years and beyond.

Friends her age have excellent conversational skills, she has none. She is needing more and more time alone in her room. She is slowly but surely abandoning extracurricular activities, and where she was once in the top half of her class, (probably sitting at just above average), she has now fallen to the bottom, although she is still meeting the expected standard. Getting her to do any work at home is an uphill battle, and she would happily spend her whole life tapping on the iPad if we allowed it. I can see that she is disengaging from life outside of school. When age 16/18/21 comes I can see things falling apart for her. She does have a group of friends and she does continue to be invited to parties. However, general playdates are very few and far between. When I have hosted playdates here, I don't feel she gives much back in terms of connection/friendship.

The other day her friend was on face time and said she was going to go, but instead of saying 'no problem, see you Monday, bye' , she just switched the ipad off and I had to explain that its appropriate to share a nicety, and at least say goodbye. I'm been trying to coach her like this for years but she doesn't retain any of it and makes no progress. I hate that it comes across to family members, and other parents that she is rude. I find the bluntness, lack of communication and lack of niceties within the family home hard to deal with myself.

Where do I start? What help is out there? What is the most active Asperger's forum in the UK? She is selectively mute (not at school, so they don't think there is a problem). Is there any kind of coaching or therapy I can get for her to help her communicate? To help her learn conversational skills?

I just really need all the help I can get, so any advice from mums who are past this first initial stage of realisation. I've had my 'aha!' moment and now need so much help!

Thank you :)

[ToddleToddleToddle]

I was diagnosed at 19. I first went through my GP would referred me to the department. They then invited me for assessment which concluded with a diagnoses. They then came up with a plan for what assistance I needed based on my situation (ie an adult needs different lessons than a child).

I don't know if they're still active, butback in the day Wrong Planet was the forum to use.

Good luck!

[JustKeepBuilding]

Asperger Syndrome is no longer diagnosed. It is now all encompassed under ASD.

In some areas you can self refer, if you can’t in your area ask the GP or school.

SALT will help. Again in some areas you can self refer, if not the GP will be able to. OT as well.

Have you spoken to the school’s SENCO?

[lollipoprainbow]

This is identical to my dd10 but she was diagnosed with ASD two years ago. I was basically handed a leaflet and that was that, in terms of support there isn't much really. I do worry so much about her. She hasn't any friends, detests school so getting her there is a nightmare and would happily watch her iPad in bed all day long if I let her. I worry so much about her future. At least yours gets invited to parties though! Mine hasn't for years.

[JustKeepBuilding]

@lollipoprainbow have you applied for an EHCP? Has DD been assessed by SALT and OT?

[aspies]

I do understand we are lucky so far, in the sense that she does have friends in her class who she's known since she was very little. She likes to blend into the background, doesn't say much, so I guess isn't offensive in the way that some aspies can be. Maybe the less she says and does the less opportunity to be rejected for getting it 'wrong'. I just feel the girls she is friends with right now will leave her behind at high school next year - they are all clever, sporty, high achievers. She won't even be put in the same class as them for maths/english/science due to ability anyway. She can't speak or answer simple questions when adults she doesn't know talk to her. She'll struggle with group work, presenting to the class etc, and I can't even imagine her being able to get a part time job at this point.

[aspies]

@ToddleToddleToddle

I was diagnosed at 19. I first went through my GP would referred me to the department. They then invited me for assessment which concluded with a diagnoses. They then came up with a plan for what assistance I needed based on my situation (ie an adult needs different lessons than a child).

I don't know if they're still active, butback in the day Wrong Planet was the forum to use.

Good luck!

Have you had any kind of talking therapies or behaviour therapy? Do you find you cope OK? Thanks for replying.

[urrrgh46]

we have a diagnosed 13 yr old and have other children (2 adults) who very likely have autism also. In our experience, other than claiming DLA there is no help. Most of our children didn't cope with school so we've home educated them.

[urrrgh46]

Also, therapy - you can NOT make someone less autistic. Most autistic people and the wider community around them would consider that abuse.

[aspies]

@JustKeepBuilding

Asperger Syndrome is no longer diagnosed. It is now all encompassed under ASD.

In some areas you can self refer, if you can’t in your area ask the GP or school.

SALT will help. Again in some areas you can self refer, if not the GP will be able to. OT as well.

Have you spoken to the school’s SENCO?

I haven't mentioned this to the school. I did talk to them about selective mutism and queried her ability to form friendships (as at that point we'd had 2 years of covid and she was still never being invited anywhere) and they brushed it off. They didn't see any issues, said she was quiet but did speak to them, and they watched her at lunchtimes and said she was always with friends and never left out or alone. The latest teacher said she would pass it to the SENCO but I heard nothing. There are a lot of issues at the school and I don't think they have the time to deal with anything 'extra'.

I think I will contact the GP this week and see if they can point me in the direction of any private services.

[ToddleToddleToddle]

@aspies I was offered one to one psychologist sessions. We basically talked about identifying emotions that you feel and talked about the unwritten rules of social settings. I don't remember how often they were (maybe every 2 weeks) but I was discharged after a year.

For me, I don't really think about it all that often. It's easy enough to just get on with life without having to worry about hving a label. Though I have to stop and think something how I can say something in a less direct way.

[JustKeepBuilding]

OP, I think you need to speak to the SENCO. It’s not unusual for schools not to see problems, especially if DC are good at masking, but if they look carefully there will be signs.

urrrgh46 if DC didn’t cope at school you could have applied for an EHCP and pursued EOTAS which would open the doors to much more support e.g. SALT, OT, MH therapies, care farms, 1:1 tutoring, mindjam, money and equipment…

Therapies don’t have to be about making DC less autistic, they can be targeted at helping DC cope. DS3 has SALT, OT, ELSA, clinical psychologist sessions and physio as part of his EHCP. None of that is about making him less autistic.

[aspies]

@urrrgh46

Also, therapy - you can NOT make someone less autistic. Most autistic people and the wider community around them would consider that abuse.

That's not what I was suggesting. Because she is high-functioning I wondered if speech and language therapy or CBT might help with the anxiety around talking. She is completely capable of some verbal communication when she feels relaxed. This is possibly a separate issue to autism and not necessarily linked. I'm learning, so forgive me if I'm getting this wrong.

I just want to do every thing in my power to mentor her and guide her through her teens and beyond. I don't want to change who she is - in fact, I'm working really hard to help her discover and nurture her special interests (art/tech/reading) and we have now dropped all group extracurricular activities.

[JustKeepBuilding]

SALT can help with selective mutism, it is often a comorbidity.

[NameChange30]

Talk to the SENDCO, contact them directly to request a meeting.

If you're still not getting anywhere with the SENDCO, contact SENDIASS to enlist their help and advice.

If I were you I'd be pushing for a referral for an assessment and it will be much easier to get that with support and evidence from school.

[aspies]

@JustKeepBuilding

OP, I think you need to speak to the SENCO. It’s not unusual for schools not to see problems, especially if DC are good at masking, but if they look carefully there will be signs.

urrrgh46 if DC didn’t cope at school you could have applied for an EHCP and pursued EOTAS which would open the doors to much more support e.g. SALT, OT, MH therapies, care farms, 1:1 tutoring, mindjam, money and equipment…

Therapies don’t have to be about making DC less autistic, they can be targeted at helping DC cope. DS3 has SALT, OT, ELSA, clinical psychologist sessions and physio as part of his EHCP. None of that is about making him less autistic.

All of THIS. I'm sure there are things to help cope with life, and improve the quality of life. I recently met a work friend who was diagnosed later in life and has turned life around since receiving various forms of help. I'm just wondering what's available, and want to consider it all.

Thanks for those ideas!

[urrrgh46]

@JustKeepBuilding it was more important that our children got an education then we continued to fight a system that lacks money and didn't and i do say didn't want to help!! Also, ultimately our children hated school - they view it as oppressive and irrelevant to them and we respected their view. We do get DLA and use that for resources etc to enhance the education we offer.

[Robotindisguise]

My 13 year old DD is very similar, and sadly has lost her primary friends in secondary school. It bothers her that she has no social life (as other people have) but she doesn’t actually want to work on friendships. Instead, she puts her younger sister under pressure to include her in her social life, which is difficult.

We are Brits living in the EU but ended up getting our diagnosis in the U.K., privately.

[YewNearsEve]

Just sympathies OP. My close relative is going through exactly this.

[whinetime89]

I am a Speech Pathologist, based in Australia. I have an autistic daughter and also am an autism diagnostician.
Under the DSM5 "aspergers" is no longer used to diagnose and your daughter would be diagnosed on the autism spectrum. The terms high/ low functioning are not an endearing term to the autistic community. When diagnosed you are given a level- level 3 is high needs level is what would previously have been Aspergers. There are some great FB pages such as Autism inclusivity which is run by autistic individuals.

[JustKeepBuilding]

urrrgh46 I appreciate your view but it didn’t/doesn’t have to be one or the other, DC can get an education and parents can fight for provision.

In case anyone else is reading EOTAS doesn’t need to be anything like school and if appropriate can be completely informal &/or child led. A good EHCP can fund far more than DLA can. DS1 has a package worth well over £100k, there’s no way we could afford that.

whinetime89 In the UK the ICD-11 is used and levels often aren’t used/given to parents. Where levels are used it is level 3 is the “most” support required and isn’t what would have been classified as Asperger Syndrome and level 1 the “lowest”.

[aspies]

@YewNearsEve

Just sympathies OP. My close relative is going through exactly this.

Thank you x

[aspies]

@JustKeepBuilding

urrrgh46 I appreciate your view but it didn’t/doesn’t have to be one or the other, DC can get an education and parents can fight for provision.

In case anyone else is reading EOTAS doesn’t need to be anything like school and if appropriate can be completely informal &/or child led. A good EHCP can fund far more than DLA can. DS1 has a package worth well over £100k, there’s no way we could afford that.

whinetime89 In the UK the ICD-11 is used and levels often aren’t used/given to parents. Where levels are used it is level 3 is the “most” support required and isn’t what would have been classified as Asperger Syndrome and level 1 the “lowest”.

Is there really that much help available? Package worth £100k. Is it only the most severely affected kids that get the help?

[JustKeepBuilding]

Yes, there is. You often have to fight for the support, but it is possible. DS1’s package is more than £100k and includes multiple therapies, tuition and other provision. I know others with high value EOTAS packages too. Many SS places cost over £100k.

DS3 is in MS secondary and his EHCP has over £35k funding attached to it. It includes multiple therapies and full time 1:1.

EOTAS is when there isn’t a suitable school, so it does signify a level of need, but therapies etc. via EHCPs can be secured for any DC with an EHCP.

[ThreeChildrenWithSEN]

It really depends on where you live it seems. You would get ETOS without either a significant period of period out of school or expulsion. Even then you would have a fight to get anything more than 20 hours.
I have done countless SEN appeals. In my county just outside of London you have to kick up a fuss.
NAS ipsea are two good places to start

[JustKeepBuilding]

You would get ETOS without either a significant period of period out of school or expulsion.

I presume you mean wouldn’t rather than would. A significant period out of school or a PEX isn’t necessary. As I said, you might have to fight for it, but that is not the legal threshold for EOTAS and parents, wherever they live, can successfully challenge it via appeal.