Overwhelming Abuse

My daughter is 12 and has been diagnosed with asd for just over a year now.  I thought things would get easier with a diagnosis but they just seem to keep spiraling down.  She got a placement in an asd unit at the local high school and now wont go at all and is saying that she wants to go into 2nd year mainstream even though she cant cope with the class of 4 pupils in the unit.  She honestly does not seem to get it that she would struggle to cope in a mainstream environment and is saying she will only go if she gets mainstream.  I am torn as thinking I want her to realise how lucky she is to have a place in the unit but she wont so at the same time I think let her try major stream and she'll soon find out how hard it is, then of course I feel guilty, I just want her to be happy.  She is always down about herself and talks about wanting to die as hates autism.  Everything I try is the wrong thing and tonight as I did t have the money to buy her a show online she went all "what's the point in living, and as parents you shouldn't of brought me into this world when you dont have lots of money's  we aren't rich but not poor either just have enough to live on which is more than a lot of people, I work full time and my husband (her dad) stays at home with her and she still thinks she has an awful life.  She is like Jekyll and hyde instantly and my husband is scared of her.  We often just dont know how to cope anymore.  She has a consultant psychiatrist who is brilliant however she wont engage with any therapies.  I always feel like something else is going on as well as asd however the dr says all these things are classic asd.  I just feel lost and no positive hope for the future, can anyone reading this understand....

  • I suspect your daughter is comparing herself to the others in the unit and feeling like she's too advanced to be there and hating the fact she's now labelled and lumped in with the non-achievers.  I think she's also hating what she hears the other kids say about that the label and the way the other kids refer to the unit and the other kids in there.  

    This will manifest itself in all sorts of self-loathing and agressive behaviours - especially at this crucial age.

  • Hi 

    Tinyexplorer has given some great advice and I would just like to echo that.

    It is really important that your daughter gains a positive view of her autism as tinyexplorer has said that is fundamental for her mental wellbeing. 

    My daughter is 8 and still awaiting assessment, she is in mainstream school and does have a few problems but school are making adjustments, she has already started noticing that she is different from her friends but we explain it in a positive way that everyone is different in someway and she just thinks and sees things a bit different. Not wrong just different we started showing her some videos by sara Harvey (not all suitable for children so check which ones if you look at them) they helped her to see other people think/ feel similar to her and it was a massive confidence boost for her 

    Have you tried asking her why she doesn't like the unit and wants mainstream?  is there a possibility of her visiting the mainstream school so she can see/feel what it is like, that way she can make her own mind up. Teenagers can be very stubborn the more you tell them they can't do something or won't like something the more they want it! 

    Did she go to mainstream primary? How did she feel about that? 

    Anyway try some of the material tinyexplorer recommended it really is important 

  • This is quite painful to read. Your poor daughter. Yes, a lot of autistic children are suffering with inadequate provisions and the effect is traumatic. My daughter suffered greatly without the right understanding and support.

    I am surprised you say she should realise "how lucky she is to have a place in the unit".  Schools always say that, that's why parents have to get active to secure the right understanding of needs and the right provisions. Clearly she feels very unhappy and clearly it doesn't meet her needs at all, given she is a school refuser. It is not clear exactly what makes her to reject the unit, is it the segregation and isolation? It seems it is totally inappropriate for her, she wants to be included, amongst peers, the placement is inappropriate.

    Do you have schools within 1+ hour drive with units where children attend mainstream lessons and are just in the unit for targeted support?

    The EHC needs assessment following emergency annual review should identify what support she needs in order to cope in mainstream. You need to assess and document her needs. The LA and the school placement and the EHCP should  enable her needs to be met. This is her right in law. Don't accept schools telling you she should feel lucky in distress and refusing school. They are failing to meet her needs.

    Given your daughter is so distressed and her self esteem is so damaged and desperate, the best place for her might be where she could feel appreciated and included, where she could rebuild her confidence and build a positive identity for the future. Research indicated that having positive autistic identity is associated with much better outcomes for success, health and wellbeing, so it is indeed the most important thing.

    'To improve mental health in the Autism population, clinical approaches should aim to facilitate development of positive Autism identities':  .https://researchportal.bath.ac.uk/en/publications/social-identity-self-esteem-and-mental-health-in-autism

    Autism acceptance and belonging are associated with better mental health, lower depression in this article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5807490/

    'In terms of acceptance from closer social networks, having the opportunity to engage with others who are like-minded and to develop one’s sense of belonging is thought to be important to the well-being of autistic adults (Milton and Sims 2016). Indeed, sense of belonging is argued to be vital to the well being of all individuals, irrespective of autism (Baumeister and Leary 1995). Research has also suggested that previous experience of contact with autistic individuals is associated with greater autism acceptance in university students (Gardiner and Iarocci 2014) and those with a family member on the autism spectrum tend to be more accepting and open towards autism (Nevill and White 2011). Longitudinal studies have also shown that autistic individuals believe supportive family and friends help them to develop greater feelings of self-worth (Hurlbutt and Chalmers 2002). Equally, parents of autistic children who demonstrate higher acceptance of their child’s autism have been found to have fewer mental health problems (Weiss et al. 2012). Additionally, in a study where loneliness was positively correlated with anxiety and depression, individuals on the autism spectrum who reported having more friends experienced fewer feelings of loneliness, as well as fewer anxious and depressive symptoms (Mazurek 2014). As such, it may be that feeling accepted by others could act as a protective factor against mental health problems...

    Poor self image and lack of social support leads to poor outcomes https://www.tandfonline.com/doi/abs/10.3109/13668250.2016.1262010?scroll=top&needAccess=true&journalCode=cjid20

    With a place in a unit she has an EHCP, if not get one!. Given she refuses to go, you could call an emergency annual review and change the placement. Find a school where she could thrive and go for it all the way. Don't lose time, as it is very damaging for your girl psychologically, she needs to feel included and happy.

    You mentioned she hates autism, this is very unhelpful, she should develop a positive identity about herself, a 12 years old can't be growing up feeling defective and unworthy, this is awful.

    Autism is awesome boys and girls talk https://vimeo.com/216052066

    Does her HCP specify /the school have ASD specialist teacher, are they doing asd training with her developing a positive self image, demand that.

    I don't know whether reading this will give any ideas. https://twitter.com/AnnMemmott/status/1133081576210870273

    Get her to listen to something more positive, like Sarah Hendricks this is one of her slides   

    Note the female role models websites and books.

    Good luck,

  • Could it also be the beginning of the dreaded puberty? ASD and puberty not a good mix...