God where to start?
This has been coming for months now, and our son seems to be in a downward spiral with regards to his behaviour.
He was on Ritalin when he was six, for only 4 months before I could stand no longer the way it made him so isolated and seems to make him almost 'zombie' like. That was the only time he has been on it.
He seems at present to be completely out of control. As we have two other boys on the spectrum I understand fully the traits, routines, communication problems associated with autism.
Our son has little communication, he can say unlinked words, hums in different tones ie, happy is a high pitched tone, distressed is a crying hum, hyper is a drilling tone, but he has great difficulty in expressing his wants, needs or emotions.
We are at a loss as to why his behaviour has become so erratic, he is very set by routines and these have been kept too, apart from the odd occasion where unforeseen changes happen beyond our control.
Currently he is,
~aggressive (which is so unlike him)
~After being out of nappies for 5 months his toileting skills were excellent, however now he is weeing constantly on all floors, in toy boxes, in his bed.
~He is spitting water and juice is peoples faces.
~He is screaming loudly, for no reason we can determine.
~He understands when he has done something wrong, as he laughs at his actions, the response from others, then runs away before he can be caught.
~He is throwing items belong to the family out of the bedroom windows and hiding close personal toys belonging to the other boys.
~He is stealing food, often we only find out when cleaning the bedroom and finding the wrappers, food bits, hidden behind his bed or in toys that only he uses.
~He is becoming aggressive to Bracken, our chocolate labrador, whom in the past he has had a deep connection with.
God such a negative list, he is a beautiful child and can be so loving. It truly breaks my heart to see him like this, but after many a day of me crying in private at the sheer frustration I feel in being unable to help and understand these outbursts, I am at a crossroads now regarding Ritalin.
I REALLY don't want to put him back on this drug but after trying many behaviour programmes, having taken loads of advice from professionals, and knowing that his behaviour will carry on to get worse, I feel this is the only option now available.
His behaviour is not only disrupting him, but the family as a whole. We not only have his needs to consider, but those of our other two who are special needs as well.
HELP!!! Ginny Jin... Yes he has had therapy, and it was those professionals that put him on Ritalin at six years of age. In the UK (where we are) They usually don't give this drug untill the child is over eight, but due to the high level of his ADHD, the fact that the Special Needs school he was attending, found him too hyper to handle, he was placed on this drug. We have also looked at his diet, he has been on a wheat free, gluten free diet before, but once again, there is no change? I agree with Steph - try the Ritalin in the short term. How long is it since he came off Ritalin? Has there been any other changes in circumstance that could have made him deteriorate? Is it possible to see another doctor who may have different treatments or ideas? Hope he gets better soon.
XX As Justmein has said there are more medications than just Ritalin on the market. Some of the others are the same drug with a different name so there's no use trying those. there are some however that are recommended where there is co-morbidity (autism and ADHD) they don't work as Ritalin does. They take several weeks to begin to work effectively but from what I have been told by our paediatrician they then work 24/7 just by taking one tablet daily. She has told me they can be better than methylphenidate (Ritalin) for autistic kids as Ritalin can heighten autistic traits in some children which this other drug doesn't do. The downside is that once you start this drug you have to take it every day. There can be no "drug holidays" at weekends, school hols etc which is something that you can do with methylphenidate.
You must be at your wits end. I also have a son diagnosed with autism/ADHD although he is far more high functioning than your son by the sound of things. Our boy can drive us to distraction at times so I can only imagine how your life must be. Hats off to you!
Our paediatrician has asked us to consider this other drug for our son as we find that Methylphenidate can have a rollercoaster effect for him. When it wears off his ADHD spikes for a while. This wouldn't happen with the other drud apparently as it never wears off. Also this other drug isn't an amphetamine and so isn't open to potential substance abuse in the same way as methylphenidates.
I've forgotten it's name so I'm off to find the leaflet she gave me and I'll add the name of the drug as an edit later:)
Also as drugs and drug names vary from country to country, where do you live? I'm in the UK.
Edit: Found the booklet! The name of the medication is Strattera and it contains atomoxetrine. If you want to know anymore from the leaflet e-mail me or even if you just need an understanding sounding post to let off steam at drop me a line. I dont think i can be of much help but i did cry when i read your story. You're not alone, you sound so much like me i.e listing the negatives and then feeling so guilty for doing so you back it up with what a lovely child he is....people who understand autism will have no doubt you have an adorable son so don't worry, at the moment he's having a bad time and you're trying hard to help that's all.
Right the only advice I have (it's not much) you seem to have tried everything possible, diet, behaviour programmes etc etc and perhaps medication is the next step. There is no right and wrong with medication if it helps, then why not, it's given your son a better life and in turn your family surely thats got to be worth it. I understand your concerns over Ritalin though, when I was having severe probs with my son and everything else failed we were given Methylphenidate. It is part of the Ritalin family but it has short term effects so you can give it regularly if needed or you can give it when you need him to be 'calmer' i.e don't quote me exactly its been a long time but it takes approx 30-60 mins to kick in and then lasts for approx 4 - 6hrs (check timescales out i could be totally wrong) but what i am saying is that with this it can be given when you're desperate but don't have to feel guilty about him taking it all the time.....ask your consultant about it.
I used to give it to my son if we needed him to go somewhere and then would go days without him having it but equally he could have it 4 times a day if needed. - Good luck xx http://www.nas.org.uk/ (or) http://www.nas.org.uk/nas/jsp/polopoly.j...
you need to get in contact with them
they do have school that may help if you live near
http://www.autism.org.uk/nas/jsp/polopol...
or why not contact paediatrician for respite care for your son so you can have a break
as i dont know much about this disorder this the best i can do Hi, first i have to say. you are doing amazingly well with a very difficult situation. i too have 2 sons with aspergers and 1 with sensory integration disfunction. My immediate reaction on reading your post was 'is this a sensory problem'. As wise owl said, the sensory issues do change over time and it may be that your son has become either over or under aroused - yes really- my 3rd son (S.I.D) behaves in a similar way, but not to such an extreme, because he needs sensory input. he is either over or under aroused but rarely just right!
Maybe if you can get some respite care to help you all, then try to see a Sensory integration trained O.T for an assessment. Also, is your son's school still the right place for him or have his needs changed. If he is unhappy there the added distress may be exacerbating his behaviours.
If you find you do need to use Ritalin for a while, then do, so you can all catch your breath and work out how best to help your lovely boy. Also, it could be age related. All boys get a burst of testosterone at around 6-8 yrs. Both my asperger sons became much more aggressive at this age even taking out the distress caused by school problems. The 2nd boy had not been aggressive at all until 7yrs of age but is now. the older has just begun to realise what his behaviour does to people, thanks to his fantastic specialist school.
Im sorry not to be able to help more, but maybe there are a few ideas for you to try. take care and I hope you find some answers soon. Is he in therapy - he needs human to human contact, not drugs.
Did you try ABA.
Edit - He needs to be properly reinforced for good behaviour with his favourite toy/object. He needs to be literally trained by you from scratch for toileting procedures and eating behaviour. Don't leave anything to chance or make assumptions that he knows what he's doing. If you show him step by step you should see a drastic improvement in his toileting issues. I understand your concerns about ritalin, but please don't feel that you have failed by reconsidering it. You might need it as a temporary measure just to 'steady the ship' whilst you get a handle on the real causes of the problem.
Having two other boys on the spectrum must certainly keep you busy!!
As a child with a neuroogical dysfunction gets older and develops, although the dysfunction itself is not progressive, - it does not worsen, the relationship of the parts of the brain which have matured and developed, to the dysfunctional part, changes. This often accounts for sudden changes in behaviour / temperament.
Very often these change are driven by changes in the way the child perceives the world in sensory terms. For instance, a child's hearing might suddenely become hypersensitive, or conversely, undersensitive, which might lead to behaviours such as becoming quiet and withdrawn, or conversely, making lots of noise and seeking out loud sounds.
It sounds as though your little one has become a 'sensory seeking missile,' running around for hours. This could be an attempt to self stimulate the vestibular mechanisms in the brain. The cranial nerves are responsible for carrying sensory information into the brain and some of these go straight into the vestibular areas of the lower brainstem.
Hope this provides some logic to the problems you are facing. you only mentiuon 1 drug--Ritakin--
there are about 10 options--at least in the US--would you consider tryign something else
also --are yousure it is ADHD--even top professioanls often confuse the autism with ADHD--
but being that the meds did calm him (too much) it is likely it is ADHD
if it wasn't ADHD--the meds wouldn't have worked taht way.....
in the US-we have compunding pharmacies----
for example--if tehlowest dose available is 10mg--but that is too strong---a compunding pharmacy can make it ina lower dose--like 2.5 mg so it has a chanve of being calming without zombie like There is a place for drugs in treating problems that you describe. Perhaps you could try half of the dosage he was getting in combination with the applied behavioral analysis. This could work. Hun, I was told by my paediatrician once that if the ritalin or any of the other ADHD medications make the child zombie like, then they are on a dose that is too HIGH.
Try it again Zoe even if it's only temporarily until you can get a handle on why he is acting out the way he is. Something seems to be causing him stress, but until you can control the behaviours, you're not likely to be able to get to the bottom of it.
Try the ritalin again at a lower dosage, at this point hun, you've got nothing to lose. Jesus. I really dont know how you cope Zoe. You are doing an amazing job. I have so much respect for you and Gillon, I'm full of admiration for you both.
I dont know much about autism but I'll try ~ Is Ritalin the only drug available? Can your son have a smaller dose than last time, i.e so he is not so zombified but just slightly calmer?
Please dont think you are failing by resorting to drugs, I think you all can do with a break from this situation the way it is now. So how about he has Ritalin (if nothing else available) short term again, just to give you all some time to get your breath back? i do not advise putting him on any "drug". you need to see a DAN dr to get him on supplements to calm him down , such as dmg, we have used it on our 3 yr old with autism for behavior balance. also, aba therapy works for behavior issues. you just have to redirect them to something else, and let them know it is wrong. that is all you can do. don't drug him like a zombie to avoid dealing with it. it is what it is. try to help him out other ways. good luck My heart goes out to you because I know so well what you are going through.I have been in the same situation and was at my wits end trying to find out how to stop all this negative behavior. Then I decided to try and figure out what changed from day to day. my son is 7yrs old and I just figured it out about 2 months ago. Dairy products or food containing dairy products make his behavior unacceptable and intolerable. I have not taken dairy away completely but we limit it very much. I suggest that if you decide to try taking dairy away please do it a little at a time. I found that with my son chocolate is a big problem and I think it is the milk chocolate. I wish I could help you more and give you an answer but all I can do is tell you what helped here. I hope you figure it out because I like you did not want to do medication. I can tell you that Brenden's medication for his ocd also has helped him. I was worried about that medicine too but now I am glad we tried it.Please feel free to e-mail me if you want to ask me any more questions. angelafish1973@yahoo.com I've got to tell you that I am really not a fan of stimulants for the autistic population at all. I understand its addressing the ADHD but in children with features of ADHD and autism how does anyone truly know that the ADHD isn't bipolar? Really who is certain that hypomania and/or mixed episodes are identifiable in young children? I find it interesting that the autism/ADHD population generally do very poorly with stimulants, and SSRI's (these make them manic-y)
If he were my son, ritalin would not be the first drug of choice. If I were to choose a stimulant I'd go with concerta, its prescribed the most of all the stimulants, but provided that you are fairly certain he doesn't have bipolar, and not much anxiety either. Vyanese I find to be better than Adderall XR again its a stimulant.
My first drug of choice would be risperdal. Have you tried this? It is FDA approved for autism. It does help with obsessions, compulsions, focus, concentration, decreases aggressions etc.
I like xanex alot. This med works regardless of dx and really does take the edge off
For the bipolar type with autism, or autism with bipolar either or I like lamictal and depokote.
My oldest son is 8. He is dx with PDD.NOS/ADD.NOS. At one point neuro wanted stimulants, we declined. My father has asperger's and is very against stimulants in the autism population. He works for the largest residential group home setting and is the psychologist. He constantly is taking kids off the stimulants, and they do better. He told me to never consider a stimulant for any of my boys. I would consider risperdal, oldest has used xanex for occasions (dentist, wedding etc), and I would consider lamictal/depokote
I feel he is PDD.NOS/bipolar
I have an ADHD 2.5 yr old son, neuro wanted clonidine. Although I like the med, I don't like it for someone that young
I have a PDD.NOS 3.5 yr old son who has a lot of anxiety. He is very aloof and probably asperger's
For the constant running have you tried sensory integration type products like a weighted blanket, huggie vest (southpawenterprises), ankle weights, vibration, bubbles, trampoline, or sandbox?
My oldest has been to a DAN doctor with great results, actually we did a homeopathic detox over chelation. DMG is used for speech, my son was on this for awhile too. I know nothing of autism, other than it is marked by difficulty in communication. Additinally, I have heard of possible food allergies making it worse. Of course with a diagnosis of autism, a doctor would know more of how or what is causing it - to their ability to understand. It certainly sounds like your son is frustrated with something, and very likely that he can't voice it to you. Is there a way to back away from the situation and see if anything has changed in your family circumstance that may be upsetting him? Perhaps, try to find a calm place where you can go over things and see if you can think of anything different that is happening or change in routine - autistic people/children do like routine, right?
I can certainly see that a medication that might help with the ADHD may be of some assistance in what is happening. Your son may even be frustrated with his own activity level - he really has nothing he personally can do to make it less severe.
The only other thing that may be of some assistance is what helped with my own ADHD son: Try reading books by Dr. Doris Rapp. These books are written with an immense amount of information directed at discovering whether foods can be a possible root to the ADHD problems with any particular child. This was such a help to me when my son had the ADHD issues. It also helped a great deal with temper and behavior issues, since some of the foods that bothered him contributed to his temper outbursts. This does not mean that your son could not still be upset by something in his personal situation, but it would definitely be well worth looking into. I cannot say enough about this author and her understanding of the topic, and ability to explain the information to the reader. If you can pick any of her books up (used booksites online), this may be of some assistance with your son. Good luck in whatever you do to help him with his frustrations. Some of Dr. Rapp's books are: Allergies and the Hyperactive Child, Is this Your Child, Our Toxic World, and possibly others. You can also see her on an old Phil Donahue video, through Youtube - just look her name up, in Youtube. By the way, the hiding of foods may be a clue to a possibility of a food sensitivity. Also look up ADHD and Candida, ADHD and Leaky Gut, ADHD and Food Sensitivity. Peanut products are a special concern for some children, as well as other foods, too. You are dealing really well with an unbelievably difficult situation.
Most of his behaviours are attention-seeking and he clearly prefers to use his behaviour to communicate with you. I presume the school have already devised specific strategies of not giving him attention when he displays these behaviours? You sound very knowledgable and if his special school, with all their resources, find him challenging then you must have amazing reserves of strength!
Quality medical advice is key here - he should be on the caseload of your local CAMHS's best specialist. I have know children who were 'zombies' on Ritalin find Concerta better as it's more slow release. Some doctors prescribe Risperidone (anti-psychotic) for severe autistic behaviours - see summary of research below.
Can I just add that ABA isn't a perfect solution: parents are relieved cos children often develop the use of more language but it's often rote, not generalised, learning; it's totatlly dependent on adult prompting and there is no socialisation in pure ABA. |
