HFA or ADD?

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@schleppenheimer - will post the outcome of the Ritalin trial

As a general comment I think any medication should be taken at the minimum effective dose, because of side effects etc. Also I am happy to try and second guess doctors (maybe comes from being the son of two doctors myself) as there are obviously good ones and not so good ones. We currently have an excellent doctor for my wife who has schizophrenia, and he did a really thorough job of reviewing the various medications she has taken over the past twenty years, which has been really helpful (and in fact she seems better now overall on the medication he has prescribed than she has been for quite a large number of years). On the other hand I question to a degree the diagnosis of our son's psychiatrist in dismissing ADD and rediagnosing him as exclusively ASD. It is not as if these decisions don't have an effect. It might be that a Ritalin prescription three months ago would have helped our son significantly; without it he has continued on his rather catastrophic academic performance this year and his exams are only two and a half months away. Of course we are taking a lot of controlling measures to help as well.

In your shoes I would certainly have reservations about massively increasing the dosages, especially given the side effects. Perhaps once your son seems more settled, you could look at scaling down the dosages until you found the minimum required to be effective.

My daughter 15yrs (ADD) takes Ritalin she been for nearly a year and half, she started with the low dosage and built up to 40mg. I have just posted this on another thread. Her grades in school improved and she is still improving when from C,D to A,B.

As a parent I find it difficult to give her medication but she has a choice and finds they are very helpful she doesn't have any side effects did have some at the beginning but short.

My son now 13yrs dx ADHD 5yrs ago, then last year AS, recently OCD we tried different medications for ADHD not Ritalin he is now on strattera max for his height and weight. It is suppose to work 24hrs not sure about that as he would get very hyper at night but manageable. He recently only got dx OCD and because he finds school very difficult anxieties the psychiatrist has prescribe another medication to deal with this. As he only started recently I have noticed improvement but its early.

Regarding the strattera it did help with focus and concentration, homework, school-work in primary school and hyperactivity. He is also involved in sport and the medication made a difference in following directions, instructions and he is a very good sportsman and plays lots of different sports.

But when he started post primary things went down hill but that was more to do with anxiety. We are now trying to manage this. His sports aren't affected, but school nightmare. Hoping for a better year.

My dx was add( we were on the dsm 3 back then) flowed by pretty much every mood d/o out there and finnally aspergers.

Yeah - seems to be quite common for an initial ADD diagnosis to be followed by some form of HFA diagnosis later.

Well the Ritalin is a mixed bag so far. I've noticed our son actually engaging in conversation eg actually asking a few questions (eg who plays on our local sports field) etc, which he does not usually do. So that's good. And with a bit of pushing he put out four pages of notes on the weekend for some classics homework (I first showed him how to take notes from his textbook and am making him write things out so I can check work is being done) - and four pages was an impressive effort for him!

But this morning I rang home and our son was still there (not at school). He had asked his mother when she was leaving for work (he leaves last) and then obviously decided he wouldn't go to school today! So he was being both deceptive and practising his usual avoidant behavior. (He has definite avoidance issues). He said he had a headache. I don't know if this could be any side effect from the Ritalin. He also said that the Ritalin was demotivating him (guess he may mean it is slowing down his racing thoughts) although, apart from not going to school in the morning (-his mother took him into school about midday!-) this is not evident to us his parents.

Well, it is one day at a time.

What about cognitive delays? Was he slow to learn speech? Special interests? Unusual behaviors? When he is actually paying attention, does he have any trouble learning? Has he already received a lot of therapy?

I ask these things because I pretty much refer to my older son with classic autism as HFA when talking with other moms. He's been worked with enough, is on snti-anxiety meds, and is doing well enough that the LFA label doesn't work for him. However, he certainly does not have AS like my younger son--who is a whole lot sharper and didn't have all the speech issues but is chock full of fixations and unusual behaviors.

@blondeambition

Thanks for your response, although I note you're drawing the distinction between HFA and Aspergers (which I think is being abandoned in DSM V?) rather than between Aspergers/HFA and ADD.

"What about cognitive delays? Was he slow to learn speech?" - He did not really have cognitive delays, if I understand your query. His language development seemed more or less normal and he learned to read without difficulty (although he is a very poor reader overall). He seemed completely unable to learn math - eg would play math blaster cd rom but would just repeat the first couple of levels without going further. He wrote in capitals until around fourteen or fifteen.

"Special interests? Unusual behaviors?" - Yes he had special interests, although I understand this is also a feature of ADD-inattention. His main interest when young was endless cartooning, at which he was extremely good. He occasionally dressed up with extraordinary attention to detail. He later largely stopped drawing cartoons and was obsessed with a microsoft program called 3D movie maker, and made some moderately good films in that medium. When he got a bit older he developed an interest in filming and was obsessed with that. We helped him make a film in junior school and it was quite good, but when he tried to continue filming in intermediate school without our (considerable) help the problems of organising the film completely defeated him.

I would say he has some unusual behaviors eg when little he would always be pulling faces and never be still (more a feature of ADD than autism). He sucked his thumb until about fifteen. He will quite often wrap himself in a blanket and sit on his chair in front of his computer, even in summer. He will sometimes just sit seemingly doing nothing for quite a while. (These latter features seem more autistic to me). Apart from this communication with him has always been very difficult (-he seems to live in his own world).

"When he is actually paying attention, does he have any trouble learning?" - Yes. It is hard to gauge his intelligence level; I am inclined to think him somewhat below average or average, but a doctor who examined him a few years ago said he was of above average intelligence. Regardless, his academic work this year is pretty atrocious. He seems to have great difficulty in grasping the basic meaning of a written text, let alone the subtleties. He does not seem to remember what he was told only a short while ago. Ritalin, which he has just started, is helping some here. He actually wrote out four pages of notes over the weekend for Classics homework, and it was at least an adequate summary.

"Has he already received a lot of therapy?" - No, he has not received any therapy; I doubt we could afford it in any event. We have been aware of his deterioration over the past few years. When he was younger he had friends and the academic demands were less, so despite some lesser bullying, and even his junior school principal thinking he had aspergers (which was the first time we had heard the term), he seemed to be progressing adequately. Our (at most very marginally autistic basically NT) daughter had her ups and downs at school, but now is absolutely blossoming at university. So I guess we hoped that our son would "come right". But he is not, has lost his friends and seems quite unable to cope with the demands of his last few years at school. Our son has the appearance of a slightly dishevelled, sometimes happy, sometimes grumpy teenager - but does not seem on the face of it that different from some other teenagers. He has also learnt a number of maladaptive techniques of coping which can give the appearance of coping eg if you ask him a question he will deflect it one way or another, and it is easy to not realise he cannot answer the question at all. For example his mother can read him a text, ask him a question, answer it herself, our son will say yes he understands - but if you check he has not actually heard a word! I had incidentally to remind him about three times this morning to get going to catch his bus.

We are having enough trouble getting him to work with the school counsellor. He missed his first three appointments, and has not been going this week in his study spells to the counsellor as had been arranged. I do not know if this is because of anxiety at seeming to be "different" (by going to the counsellor) or just part of his complete lack of executive function. The counsellor, who seems a particularly nice man, said that our son is one of the hardest for him to help in the school, because he does not seem to understand the importance of being helped or make any effort to be helped. I suspect therapy would be a waste of time on that basis. For the rest of the school year (which ends November here) we are simply having to spoonfeed him, insist on rigid adherence to routines and a diary, and check on every single thing he does, in the hope that we can somehow get through most of his subjects this year (a huge ask).

Just pointing out that PDD-NOS would probably be the correct terminology in this case. You said that he doesn't definitively meet the criteria for Asperger's, so PDD-NOS would be the next step. It's not really a different disorder; it's an ASD meaning "Asperger's or autsitic disorder without all the criteria being met."

Thanks SuperTrouper - had thought that PDD-NOS did not apply from an initial look but on further thinking about it, it seems a better fit, although it is inherently unsatisfactory to have a "catchall" category like this.

http://www.bbbautism.com/diagnostics_psychobabble.htm - PDD-NOS is most often diagnosed when children have significant social impairments, but don’t have the symptoms in area (3) - (to do with behavior eg. routines or rituals which had to be followed; although our son does eg watch the same movie over and over he has never had any ritualistic behavior, nor any stimming).

Thank you for the good information.