DD, Aspergers or crap parenting?

[MsGee]

Hi

I'd appreciate any advice / insight re DD (7) as I am really struggling to know how best to help her.

There is so much background it's hard to know to start. Most of the time she is a joy but she struggles so much with the world. Main issues which may or may not be relevant are:
-struggles socially. Prefers 1-2-1 and ideal would be a friend who follows her rules

• regular meltdowns (recently referred to cahms after suicide threats in some). Often related to the world not following her rules (if you're feeling generous) or getting her way (if not). By meltdown I mean a tantrum which she loses control of and can't be calmed for 30 mins or more.
• Sensory problems relating to sound, clothing and food which are slowly improving with age. Needs v little sleep.
• V much lives in a different world. Which changes get regularly depending on latest obsession. Teachers and friends thibk she has amazing imagination but DH and I know she retells stories she has heard elsewhere most of the time. Counsellor noted imaginative play often a means of control for her
• Control and rules v important. Hates change and finds it unsettling. However thrives on holiday with me and DH.
• anxiety and confidence problems
• learning started v well at school but as work got harder (year 2) has not progressed and has regressed in some areas.

She is an only child so has probably had things her way more than perhaps in a larger family. The last year has been hard for our family with losing both PILS suddenly. She has had bereavement counselling to address anxiety which did nothing at all. Told by counsellor she is v bright and perhaps bored at school and v creative. School say she is fine there, v quiet and shy. She has been bullied and I think just keeps her head down and gets through it. We have had parenting advice from cahms and the summer has been pretty good. However as school looms and 2 days at summer camp we are back to square 1. Much screaming, tears and anxiety all week. Screaming at friends for breaking rules in a game. Refusal to go to camp one day because it was in a new location. Sobbing at night.

Cahms said no mental health issue. I can't work out if there is something going on with my daughter or she is just hard work and I am a crap parent. She just seems to find the world v hard and it breaks my heart.

Any thoughts appreciated. Hope the title doesn't offend but essentially whenever we ask for help and they see DD functioning ok (as they say) the focus is put. On our parenting.

None of this is due to so called poor parenting. You are not a crap parent, simply one at the end of her tether which is understandable when the so called experts are not listening or paying attention to what is happening. You are a victim of the "if in doubt blame the parents" school of thought.

As it stands at present her needs at school are simply not being met. IPSEA's website www.ipsea.org.uk would be helpful and I would also now consider applying for an EHCP particularly now that she is not all that many years from going into Secondary school.

Children who are both quiet and compliant and with additional needs often get overlooked at school.

ASD and CAMHS can be uneasy bedfellows (and ASD is certainly not CAMHS's speciality); you would be far better off seeing a developmental paediatrician instead and one who has proper insight into ASD. Your GP can refer you to such a person or I would pay and go and see a developmental paediatrician privately. How can anyone state that your DD is functioning ok given all the above; it is clear there is some underlying issues.

The link below may also be useful:-
www.autism.org.uk/about-autism/introduction/gender-and-autism/preparing-girls-for-adulthood.aspx

Good grief! You poor things. Both of you.

As advice before, try and get your child seen by a developmental paediatrician. They start with working out the child touching on their environment to support their investigations. CAHMS usually want to find environmental explanations for behaviour first which starts with a thorough and imprecise assessment of the family which, if she does have a developmental disorder will waste your time whilst they try one irritating strategy after the other (IMO).

Age 7-8 is the age when many otherwise coping children with hidden disabilities begin to fall apart as the demands of school and social requirements become more complex.

She sounds like my ds's who both have a diagnosis of AS now. Like your dd a lot of the difficulties became more obvious when there were issues at home such as illness and bereavement and this simply pushed them over the edge in terms of coping strategies. Although I would go along with the others that a community paediatrician may be a better bet than CAMHS for diagnosis do not expect that they can wave a magic wand and the problems will disappear. Instead read up as much as you can about HFA or AS (Tony Attwood books are a good place to start) and start implementing the strategies now. The controlling is a defence mechanism against anxiety and anything you can do to reduce anxiety will help. If you can persuade school to start implementing strategies too - perhaps arrange a meeting with class teacher and SENCO to discuss - then this will pay dividends too.

Thabk you so much. I nearly had the thread deleted before I saw replies as I was expecting to hear that I am indeed a shite parent. I have just had a good cry and feel relieved reading the replies that it's not just about parenting style.

Can I ask where would be the best place to find a private development paediatrican (am in herts if that helps)? GP has been kind but pushed for cahms and school supportive without doing much (although new teacher has senco experience so think this is the year to push for things).

Can I also ask how long a diagnosis takes?

I would ask your GP or school nurse to do the peads refferal before heading down the private route. Maybe ask for an occupational therapy refferal to to help her with the sensory side of things?

Good luck.

There are plenty of kids who DO have shite parenting that don't display the difficulties you describe.

I have no idea whether you are a good parent or not. I do know that the list merits a proper investigation from a developmental paediatrician.

I also think that if it happens that your child does have some difficulties then the whole good parent thing is quite besides the point. You cannot possibly benchmark your parenting against other parents. All you can do is the best you can with the information and resources available to you.

To get a referral and your GP to take you seriously, read up on symptoms of disabilities such as ASD, ADHD, Dyspraxia, Dyslexia, Auditory Processing Disorder and Pathological Demand Avoidance. Don't attempt to diagnose but when a symptom rings true, write it down and next to it give 1 or preferably 2 real life recent examples.

Take 2 copies of the list to the GP. Hand one over for their file. They will take you seriously then.

In Herts you'd want the CDC (Child Development Centre).

If you suspect ASD then it might be worth getting in contact with HARC (they are an ASD group but usually publish generic local support groups and information sources).

As OneInEight mentioned though, a diagnosis of some kind doesn't perform magic or bring forth help on its own, so I would do much less relying on professionals to help you and learn as much as you can yourself.

MNSN is a good place for that and for pointers.

Do you think that your dd is better on holiday because you are able to accommodate and pre-empt her needs and therefore smooth her path more than the unpredictable school environment is able to?

If so, ask a friend with a similar aged dd to go through one of their days in the holidays and then run through that same day in your head with your dd. How would she have been? What might you have done that the other set of parents didn't have to, to make it work? All worth thinking about for your GP appointment.

Just to say, we went to Cahms not so long ago and like you i was told it wasnt a mental health issue,but they did also say he needs assessing for Asd however we have been to Cahms before.

I have discovered all Cahms are different,some will do assessments and some wont.

I would get a referal to a peadatrician.

It all sounds very familiar to my DD of the same age. She was final diagnosed with aspergers in March this year. It was a long road of being fobbed off because she could mask so much in others presence. We also had the parenting issues and had to go down that route first.

Personally, we were fobbed off by a paed several times over the years. We ended up complaining and getting referred to a psychologist who has been fab. Took 6 months of meetings and assessments with her to get the diagnosis but we have it!

Def push for a referral. You might be better seeing if you can find advice through groups locally who is best in your area to get a referral to. It seems to be a post code lottery. Good luck!

Thank you for all the advice, I have a GP appointment for next week and am going to try and meet with DD teacher tmrw. We have had a tough week or two with the start of school and daily tantrums and upset. We have found it increasingly difficult to cope to be honest.

A friend who worked in education spent some time with DD yesterday and agreed that pursuing a diagnosis would be a good idea. Unfortunately I have heard a lot of bad things about support for people with ASD in Herts but not sure what we can do. I'm loathe to get a private diagnosis that wouldn't be taken on board by the school and have read of waiting lists for up to a year which seems ridiculous. Its already been nearly a year since I have been telling my GP that DD is struggling.

Oh well, new world to navigate I guess!

Quick update - GP making a referral straight away and was lovely. He offered me the choice of returning to cahms, neurodevelopmental referral or wait and see. It feels a bit difficult but I guess it's positive as its a step forward.

So glad to hear it's progressing for you! Really, do not worry - you are not a crap parent! Clearly your DD has some difficulties that othrs do not. From reading what you've written, a lot of what you've said (social issues, needing to control environment through routines, meltdowns, special interests) sound like classic ASD to me.

The waiting lists you her about are not just waiting lists to see CAMHS, there can be more waiting after that. I'd highly recommend private if you can. I fail to inderstand how a school can be legitimately dismissive of a private do given most will be diagnosing within the NHS too! Good luck!

Thank you again so much for the advice. The last month has been very hard and DD has been really unsettled and her meltdowns have been awful, to the point where she is begging me to kill her as she hates feeling so out of control.

However, things are now progressing. I have spoken to HARC (local national autistic society) and they have been great and we are going for a private assessment, which will be in December. School might be getting play therapy for her (but nothing else they have talked about has happened so not sure I will hold my breath) and I have started a parenting course for dealing with challenging behaviour - which has been such a help. Its reassured me that we are doing so much that is on the right track but even being told specific things to say when she says she wants to hurt herself is helping us all enormously.

MsGee you know your DD best and its sounds like you are working really hardt to support her
Schrodnger girl was very similar to your DD and I too think she does sound like the female presentation of ASD which also has features of PDA
There are lots of people here who will offer support many with DD's like yours

Good luck msgee , I hope the assessment goes well and whoever is doing it can help you to understand your Dd a little better. I agree with schrodingersmum that female prestentation of Asd can be very different to male, make sure your assessor has experience with girls on the spectrum.

I have a Dd with Asd who is extremely demand avoidant when stressed but at school she was invisible.

Hi MsGee. Your DD sounds just like mine - just got her diagnosis of Aspergers last week, now age 10. I hope it is of some comfort to say that my DD used to say she wished she was dead, but that seems to have passed. The best thing the school have done has been Circle of Friends - maybe try googling it, the concept is basically a group of children to look out for her and I believe it is particularly beneficial for girls as their peers tend to enjoy the nurturing process. My DD had gone from being alone for 90% of the time to bring with friends 90% of the time. As well as the paediatrician try to push for regular meetings with the senco - I've finally realised that I'm OK to keep in regular contact. BTW you sound like a brilliant parent - coping with the hard times and seeking support for your child is what she needs.

Thanks everyone. We now have aa appointment at DATS for a private assessment in late November and the NHS referral was bounced back by the school health visitor so we have been referred directly to the CDC which was mentioned above.

Can I ask if we should keep on the NHS track whilst having the private assessment?

On the whole though it's been a good week or so (not sure how I got to the point that I measure absence of suicide threats by DD as my baseline for a good week but there you go!).

Thanks re circle.of friends. School did this with her last year but as she had to choose people she found it stressful and asked to stop doing it. I will Google as I'm.sure.it shouldn't be a burden to children!