I have a a 12 year old son who has autism and has been diagnosed since he was 6.
He has always been fussy with his food, but just recently we caught him making himself sick on an number of occasions and we know of other times he has been sick many other occasion but we dont know if he has done that himself. He is also very underweight and all his bones are visible through his skin.
We had him back to camhs where we have been told it too early to diagnose anorexia . Also they said to give him vegetable fats in abundance such as nuts seeds and fish !! not gonna happen !
Just after some advice really or similar experiences
Thanks claire x
Could be an OCD issue. I have this. I want everything to be perfect and can spend up to half an hour in the supermarket just trying to find the perfect tin: the tiniest blemish will put me off. Unfortunately, those nosy neuro-typical types come over to me and ask me why I am spending so long (can't they mind their own business?), and this just makes me more anxious!. Luckily my support worker was with me today when this happened, and she told one nosy lady that I was simply looking at the ingredients, to which the lady replied, 'but there is nothing in these tins, just tomatoes'!.
OCD can be treated but it takes time and set-backs are to be expected. Support workers, I find, are more helpful than CBT therapists
Having just trawled the NAS site, your reply seems most relevant to our son (13yo) who is rapidly descending down an eating disorder route. ASD/ADhD,with long felt traits of ODD or PDA. Battled to get help at CAHMS, rejected by LDcahms re higher than threshold IQ, just started seeing an 'Art Therapy Phycologist' but we aren't getting any advice as parents about how to deal with Harry's obsessiveness with eating, over exercise & toileting fascinations.... In fact not confident we're getting the right support for H, reckon he just enjoys 'his focus time' with child centered Cahms because it gets him time off school... I'm a persistent parent, just need to know which direction i should be putting most of my energies into? Hoping you are still active on this NAS forum.... or anyone else with ASC & Eating Disorder link. It's taking over my son's already heavily burdened life, and considerable effects upon the rest of life/family etc...all the usual stuff for a super parent of super ASC children
Help much apprecauted
Do you believe your son has an actual Eating Disorder, such as Anorexia or Bulimia? If you do, I think that your son should be referred onto the Eating Disorder Pathway, so this could be a direction to pursue, if applicable. However, if you believe your sons relationship with food is more 'grounded' in his ASD, his obsessions or compulsions, then Art Therapy could really be a great help to him with this.
In this respect, please don't underestimate the potential worth of Art Therapy. Although I do appreciate that, for those who are (helplessly) witnessing it, rather than experiencing it themselves, it may well often look like a waste of time and load of 'feel good' meaningless rubbish. But, if it is done well, real 'work' definitely takes place, it can be fantastic, and can enable positive change to occur in 'real life' terms.
However, I think that it would be better for everyone if you did feel more involved in your sons treatment. Although attending his sessions would be inappropriate as this is his much needed 1:1 time with his therapist, perhaps you could instead arrange an appointment to meet with his Art Therapist/Psychologist alone, to discuss how you may help him best at home, reflect on his progress together, and to let them know you are feeling excluded.
Best of luck.
thanks for replying - you mirror what the Therapist is telling me, so I will continue to keep the faith. The trouble is we, as Parents, don't have any access to advice. We want to prevent the manifestation of the eating disorder taking over his & therefore our lives. Not least to avoid further mental & physical health issues
Eating Disorder or ASC?? difficult to say as I have very little understanding of either. Cause & effect...
It appears there's a common link between the 2. Obsessiveness & sensory factors are strong in both, body image, perception, puberty, esteem, anxiety, having control over something unlike in most other areas of his life. It's a myriad of stuff, but one which our lack of understanding (Harry's challenge to communication) is at the heart of our mutual anxieties. It's a mess & we simply don't know what to do to help
coupled with the fact that ODD/PDA traits make it seemingly impossible to give any reasoned & simple advise. Whilst he's being given the opportunity to have his 'safe-space', he's increasingly going the other way with his eating/over exercise/toileting obsessions/body dismorphia.... Clearly very challenging for parents to experience, and go against better judgement to try & help
Think I'm just repeating myself now, going round in circles as ever
Assume that I just need to be making a nuisance of myself with Cahms, to get more eating disorder advice. Rather than adding to the fuel with Harry by giving attention to the problem, which he is so very adept at inducing
There is an information page here on the NAS site about eating problems in people with ASD which you can view here - http://www.autism.org.uk/about/health/eating.aspx. There is information about what the causes may be, strategies for managing difficulties with food, communication tips, and links to further information about coping with eating disorders in a child on the autism spectrum.
If you would like to talk to someone directly, please call the NAS Helpline on 0808 800 4104 (open 10am-4pm Mon-Thurs, 9am-3pm Fri).
Ross - mod