ASD 'treatment'. What have you tried?

[LizLocket]

I use the term 'treated' very loosely but my poor brain can't think of a suitable alternative this late into the evening.

I'm not sure what I think about the whole interventions/treatment issue with ASD. My son's autism is an integral part of him making him who he is so getting rid of his autism would be like getting rid of part of him? Sometimes think society needs to change, not my son. Yet like with both my boys I want to do whatever I can to maximise his potential functioning and make his journey through life as easy as possible. To reduce the times when I see the confusion in his eyes when he doesn't fully understand what someone is telling him or the anxiety and distress he shows when can't get to grips with a new social situation . Read so much these days about the importance of early intervention programmes and it's benefits for the future functioning of the child.

Reading websites about the various behavioural, educational and biological interventions is mind boggling to say the least! It takes you long enough to read all the info before even thinking about embarking upon doing it!!! I don't think we've gone down one particular pathway. DS has speech therapy and I'm using the More Than Words book (such an great book ) at home which really suits my son. We are starting Early Bird in a fortnights time too. We have weekly visits from a teacher from the Early Yrs service who does playbased activities with DS, similarly at nursery where they have set up a basic behavioural programme for him too to help his play and social skills.

I admit to being quite sceptical about biomedical interventions though am now wondering about the gf/cf diet. My youngest son is dairy intolerant and we have recently put DS1 on a low dairy diet as he has sloppy poos and it seems to have helped this and may his concentration. We tried fish oils but it gave DS1 nightmares so we stopped them. He's also on prebiotics which I'm not sure are doing much but not likely to do any harm so am sticking with them.

I suppose the other thing we've tried is not aimed at my son at all but at us adjusting how we do things and structuring our lives to make life easier for him. Took me a while to realise that interventions weren't just about changing DS but also about changing the environment about him too

I know this is so individual, different interventions working for children on the autistic spectrum but just curious really as to what others have tried and whether it has helped or not

Liz x

Depends on the child.

DS1 has been gluten free since he was 2 (he is 6 now). He is also MSG/aspartame and peanut free. If he has any of these his self injurous behaviour is appalling and he will headbang hard enough to bruise (quite badly!)

He has had SALT- mainly working on receptive language- aged 6 he is still non-verbal.

He has had part time ABA- when he was in mainstream school and not learning anything (spent the whole day walking round the shcool with his 1:1 as far as I can tell- didn't quite realise that at the time).

Has had a sensory programme from BIBIC (helped quite a lot).

Now his school (SLD/PMLD) does a lot- sensory work- such as dark rooms and light rooms and sand and splash, hydrotherapy, speech therapy, they use a mix of ABA and TEACHH, they work a lot on life skills (go out a lot). Also do things like donkey riding (which got ds1 speaking for the session!)

I don't think many people do interventions to stp their child being autistic (not once they've tuned into reality FM anyway- I may have thought he could have been "cured" at the beginning) they do it to give them the best chance of living independently - or as independently as they are able. DS1 won't, but I would like him to be able to make some choices if possible.

Oh and we did AIT, but that didn't work.

What is AIT?!! Not come across that acronymn before?

Did you do urine testing before putting your son on a gluten free diet or was it a matter of trying and seeing what happens?

Lx

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Socci- I agree about ABA- that structuring every minute of the day is important for a child who can't play at all and can't occupy themselves for even 1 minute. One of the biggest benefits we got from ABA was that ds1 can now play independently and appropriately for short periods- that's also how his school is helping a lot (again using a lot of behaviuoral techniques). He also began to understand a little about imitation (although still far from natural- ds3 (1 yesterday) is a far more accomplished imitator than ds1.

We did have the urine test-positive for gluten- but also trialled it- the difference was immediate. The urine test came back negative for casein but we tried it for a short period- no difference. DS1's diet is very limited. Before starting the diet he was only eating bread and cheerios. Now he eats slighty more stuff, but not much, gluten free pizza and cheesy buckwheat pancakes form the bulk of his diet. It is an area school have worked on a lot thouhg- they have managed to get him eating baked beans(!) and just generally be a bit more willing to try something.

Makaton never worked for us. We use PECS.

We haven't gone down the bio-medical route but then AFAIK neither ds1 or ds2 has gut/bowel problems etc.

As a toddler I think ds1 was probably further along the spectrum than he is now (probably moderate autism then compared to high-functioning now). There wasn't a whole lot on offer back then but SALT made a huge difference and helped him to understand what communication and language were. Portage was also a real life-saver. In the past 18mths or so I think that the intervention that has had the greatest positive effect on him has been his mainstream school's Sensory Integration programme. In Reception he did this every school day. It is basically a set of exercises based on whatever the child needs and lasts for probably about 10-15mins. Ds1 does things like jumping on the trampoline, push-ups (child-friendly versions), running in a figure-of-eight, catching a ball etc. Within a matter of weeks he had lost his jitteriness. He no longer had to keep his feet moving all the time and his need to run in circles when he was stressed seemed to disappear almost overnight. Now he is in Yr1 this has been decreased to 3 sessions a week. He enjoys the sessions. FWIW I don't think that the interventions had anything to do with him moving along the spectrum. His brain just seemed to somehow re-wire itself at around 3-3.5yrs old.

Ds2 has benefitted a great deal from sensory integration help. This is less structured than ds1's school programme but even small things like rubbing him with lotion, using a rougher towel on him etc have helped him to reach the point where he can tolerate clothes for longer periods - although his preferred 'outfit' is still just a nappy and a pair of wellies. SALT has made a huge difference to him. It was as though he just needed someone to go through 'the rules' with him.

Visual timetables, although not strictly an intervention as such, have made a great deal of difference to both boys.

When DS1 was first diagnosed (aged three and a half, with high-functioning autism) I used to worry madly that we weren't doing anything to "treat" him, and I did think about doing the GFCF diet, but never actually implemented it (although he stopped having cow's milk and still doesn't have it now).

What helped him most, initially, was going to a good nursery where he had 1:1, and they really helped him to learn play skills and integrate with other children - up to that point, he would spend hours doing stimmy things like pouring water or sand from one container into another, and any attempt at interaction with antoerh child tended to end in DS1 biting or lashing out .

For several years now we've also always made sure that he always knows exactly what is goiing to happen when - we don't do "spontaneous" in our house! That helped a lot, especially when he was younger.

He's also made lots of progress since starting at (mainstream) school, where most of the teachers have a reasonable understanding of the autistic spectrum. He is now very high-functioning and most of the time could pass as nt, I think, but still has difficulty coping with social situations.

Thanks everyone for the replies, they were interesting to read Good to read about mainstream school being beneficial for some too as our EYIS teacher thinks it will be good for DS though I have my worries!

CT-really interested to read about the sensory integration stuff. I think DS has sensory issues I don't fully understand - more sensory understimulation than overstimulation and difficulties with sensory processing. The nursery EYIS person gave me a whole list of brain gym activities a while back so I must dig them out and have a look at them again

Having a structured life has been important with my son too. Guess that's one of the ways we've had to change too. It's only recently that I've realised the benefits of making sure he is fully forewarned of things even down to things like telling him the number of shops we are going into if we are out or lots of warnings about how things are going to be. It's difficult sometimes as he cna't really conceptualise things especially if they are new but easier once he's experienced it.

Lx

I typed out a list of potential interventions for ASD for a parent support group I was attending. I got to 32!!! I'll dig it out and post it later. Here is what we've done over the years:

Fulltime ABA program (UCLA/Lovaas method). This worked extremely well although it was hard work and I think is esp good for pre-schoolers and to prepare for intro to school. Mind you, intensive 1:1 is as critical as anything when they're young imo

PECs - excellent

Visual strategies/timetabling - very good but I should try harder at this, have let it slip

Makaton/Signing - excellent

Music therapy - made no difference to his functioning but I think was "good" for both of us

Cranial Osteopathy - made no difference to his functioning and he didn't like the therapist much! I also did CO with DD for her congested passages(!) and it made no difference

Aromatherapy massage - made no difference to his functioning but he enjoyed it (much more than CO) and it helped with relaxation, and sort-of preparation for things like dentist/hairdresser iyswim. I enjoyed going with him

Trampolining - great fun and good for co-ordination, copying, confidence. I also gather that there is genuine research showing this to be the one activity that reduces stress in people with ASD the most!

Swimming - great fun again and lots of opportunity for interaction, learning how to behave in changing rooms etc

Riding for Disabled - he quite liked it at first, I found the staff rather insensitive. In the end we stopped as he began to hate it (so did I!)

Vitamin B6 and magnesium (not mega doses such as Supernuthera) - made no difference to his functioning, gave it up after trialing a couple of times

Erm, can't think of anything else right now

My ds uses teacch at ms school and the Social Communication Difficulties team have been involved from when he was 4 and their stratergies are spot on. They regularily monitor him at school and write up ds IEP'S. I use a bit of all the known stratergies and make up my own versions. Its all trial and error really but ds has exceeded my initial expectations and im now quite hopefull he will be HFA when he's older.

DS ASD almost three

HBOT (hyperbaric Oxygen therapy - 20 dives) fantastic improvements
MB12 (methylcobalamin) injections
various supplements
probiotics,
ABA/RDI
Sensory integration/OT
Music Therapy
Play therapy
Physiotherapy
Gut healing
GF/CF since diagnosis - fantastic results

We have more going on but dont want to bore you. The biggest change in our little guy came with initially with the GF/CF diet. Made huge differents in receptive abilities. MB12 was trialled for 2 months but made him too hyper. We stopped and are investigating his gut issues before continuing.

Finally, after much testing, we are going to be doing chelating after we heal his gut.

Every intervention we have used has helped immensely. The ABA has been wonderful as has the RDI which we sort of incorporate.

Oh yeah, PECS and his own specially made books with pictures of him, his family, favorite toys and familiar items. He learned about 10 new words in a week using this book and we already have to make a new one. I would highly recommend doing this for a pre verbal child.

as well as the biomed.

Full-time ABA, PECS, Makaton, Visual Timetables, Swimming, Horseriding, Trampolining (DD gets lots out of this, cranial osteo (apparently DD is so congested, she couldn't do anything for her!), Seaweed supplement (no difference), Fish oils (made her hyper), gluten and dairy free diet (going to get her properly tested, think the dairy is the big thing)...

I threatened ages ago to post the list I put together of "potential interventions" for ASD. Some I know a LOT about, some I know NOTHING about and some inbetween. I'm sure I've missed some too:

TEACCH

ABA

• Lovaas
• Verbal Behaviour
• Precision Teaching
• CABAS
• Direct Instruction
• Nina Lovaas Reading & Writing Program

Sonrise/Options

Play Therapy

• Greenspan/floortime

Portage

NAS Programs

• Earlybird
• Earlybird Plus
• Help!

Communication

• Speech therapy
• PECs
• Visual timetables
• Choice boards
• Signing (Makaton/Signalong)
• AAC (alternative & augmentative communication)
• VOCAs (voice output communication aids)
• Facilitation communication
• Social stories
• Activity schedules
• Handle
• Hannen

Occupational Therapy

Physiotherapy

Cranial Osteopathy

Sensory Integration

Auditory Integration

Medication

• Ritalin
• Risperidone
• Sertraline

Melatonin (for sleep regulation, a hormone NOT medication)

Fish Oils

Gluten and/or cassein free diet

Enzymes

Probiotics

Vitamin E

Vitamin B6 & Magnesium

Megavitamins (Supanuthera)

Nystatin (for yest overgrowth)

Secretin

Chelation (removal of heavy metals, esp mercury)

Epsom Salts

Physical Activity

• Higashi/Daily Life Therapy
• Trampolining (proven to reduce anxiety)

Swimming with Dolphins

Psychotherapy

Music Therapy

Cognitive Behavioural Therapy

Irlen Lenses

Blimey Davros that is some list

I'm with bonkers. Did CM try secretin or homeopathic????

DS1 goes to BIBIC and that has been good. Not necesarily so much I suspect because of anything theya re doing, but more the inclusiveness of it all. I mean, the excercises ARE helping, but there's a limit to what can be done.

Melatonin at night, but he has learned how to resist it

Ah can imagine it would be worth it for drastic reasons. It's a gut hormone so supposedly helps with digestion etc I think. The reason its dodgy is because it requires a GA- otherwise I think its OK- its the administering it that is bad (unlike chelation where you have to be careful about the whole shenanigans iyswim).

The people to track down re secretin are Polly and Jonathon Tommy (may have the names wrong) of the Autism File. I think their son was the 1st in the UK to get it, and they are very pro it. I just get as far as GA and think- um no thanks!

Davros you forgot MB12. methylcobalamin, injection, transdermal or sublingual. My son did great on it, but i didnt fix his gut issues prior to starting it and it made him hyper.

My DAN doctor says secretin does nothing "on its own", is not a wonder potion and is basically, for kids, nothing more than sugar water. But that is just him.

Its all trial and error, and there are a LOT of TRIAL AND ERRORS to be made unless you carry out your investigations scientifically based on what you know is your child's needs/physical problems. We were guessing and it didnt work. Now we have started over again slowly and methodically and with plenty of test evidence to back us up. He is responding well thankfully. it really isnt rocket science to figure our kids physical "systems" out but there is so much hype out there which either overloads us with info or costs the earth that as a parent i really didnt know what to do, it was like a candy store, all the promises.

Now that we know exactly what is going on with our little guy we are treating him and no longer listen to the mainstream meds telling us how its a waste of time or that his problems are "due" to his autism. His problems are due to his screwed up gut and immune system and his neurological problems, the seat of autism so to speak.

My son's gp told me that my son was voluntarily holding in 7 days of faeces, that is why he was getting constipated and that the undigested food in his bowel movements was because he stuffed his mouth and didnt chew his food. Arggggh, i wouldnt buy a used car from this man, much less take his medical advice.