Newly Diagnosed Son... NOW WHAT?

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My 6 year old son was recently diagnosed with Autism and ADHD by a psychiatrist and has been put on Celexa and Risperdal. I haven't even taken him to our pediatrician yet, mainly because I don't think he will be "good" for us anymore. When I first thought it to be simply ADHD, the only advice I could get was to take sugar, caffein, and food coloring out of his diet. They didn't even want to see him. So, I took matters into my own hands, and became a proactive parent. OK, so here's my first question...

I am certain he probably needs to be monitored by a pediatrician of some sort. Do I take him to someone with a specialty title? If so, what should I look for?

I am not sure if it matters where the Drs are concerned, but he is HFA or AS. Thanks so much for any direction. I am right outside the Raleigh, NC area if anyone here has specific experience in this locale.

Thanks!!

While I think you should at least have a general pediatrician on board for colds and such, AS/HFA kids also have a tendency to metabolize medications differently than the rest of the population. If you keep your Ped, keep him/her in the loop. If their ego becomes a problem, get a new one, making sure they are thoroughly versed in ASDs.

I don't take my son to see doctors about his autistic traits anymore. All they want to do is dope him. At 7, he's too young for dope. If your child is on both anti-psychotic and anti-depressant (?) then he should be going to a pediatric psychiatrist, I'm assuming that's who prescribed the meds? They shouldn't just Rx and not monitor such serious, experimental drugs on a child. Keep the family doctor or pediatrician for all the other stuff (physicals, disease and injuries) and make sure he has records of the meds he's on.

If your son is formally diagnosed, why didn't they tell you if he's Asperger's or just autistic?

This is your son, doctoring is a business.

Was there a need for meds?

Pill pushers will do anything for an office visit.

There is not treatment for Aspurgers.

Get a second opinion, your own.

Talk to Smelena here, she is the coolist mom, and the best advisor.

My son, who has autism and ADD, is on medication, but I have to agree I wouldn't start my kid on meds until I had tried changing the way I handled him: structure, visual schedules ect. These things work for both ADHD and ASD, an medication should be the last option.

Thanks so much for the help. His chart says three things--- ADHD, Autism, Pediatric Conduct Disorder. While Autism has so many different levels, he seems to fit the criteria for Aspergers, HFA. I haven't asked him for a more specific diagnosis, because I think to so many Drs, autism is either present or not. The meds DEFINATELY help... His repetitive behaviors are much better, his outbursts have become much less frequent and intense, and his attitude has become more compliant. I am willing to try most anything-- I don't know about a do-able diet for my family-- any real suggestions or directions are appreciated. All of you have been very helpful so far!! Thanks!!

fullhouse,

My wife and I held off on drugs for our son some time. It was a HUGE mistake in our case. If you see a tangible benefit with the drugs, I would continue with their use.

I would also recommend that you see a psychologist - someone who can provide your son and you and your husband with coping skills. A psychologist can also give you an ability to recognize the various characteristics of your son's condition and prevent you from confusing them with disrespect, rudeness, etc.

We keep our pediatrician informed on medications prescribed by the psychiatrist; however, we only use the pediatrician for physical ailments.

Good luck!

David

I've found that if you take your child to 15 different doctors of different specialties, you're going to get 15 different opinions.
I finally decided that I was the best "doctor" for my son. I was with him all the time, I knew him better than the docs that only saw him for 20 minutes every 3 months. If medication is helping him then keep going. Our son has been taking meds for almost three years. This has been a struggle for us, because sometimes I saw improvement and sometimes I didn't, and we've tried a couple of different medications. A good doctor will listen to your opinions and take them into account.
Look into your state for programs that are available to dx'd patients. Call your local health department, or if there is an agency for those with special needs they could maybe tell you where to start or reccomend a counselor or someone who is qualified to arrange special needs.
My son is 13 and we are just getting him diagnosed and finding out about available programs there are to help him. Since I am just finding out, I can't offer what's available, only that someone else here at wrong planet, and in the states, is in the same boat. Good luck!

for starters fullhouse
welcome to wrong planet.
This is a great place to be.

You will find many opinions here, both pro and anti drugs.

There are a couple of things to keep focused on.

[b]
You are your sons best advocate.

If the doctors are not addressing your concerns, you can always take your business elsewhere.

As AS is a spectrum disorder, every Aspy is different in some way. What works for some, may or may not work for you.

For some, a good balance of drugs brings behavior to a point where social skills can be learned.

Take a good hard look at yourself and your spouse. AS seems to have a genetic component. You or your spouse may benefit from treatement as well.

Being a parent of an Aspy is stressful. Depression is not uncommon. From time to time, tap yourself on the shoulder and ask yourself, "Am I OK?" If the answer is no, get help.
[/b]

Welcome!

Being the parent of a child with autism requires persistence. First, I had to fight to get people to understand something was wrong. Then I had to fight for two years to get her an appointment. Now I have to fight for her to have as much normalcy as possible in her world. But she is worth every inch of that effort. Knowing is a relief, and it's the biggest part of the battle, in my opinion.

We still see a normal doctor, a general practitioner, for the routine stuff. You don't need a specialty pediatrician for well check-ups, shots, or antibiotics. We just added a therapist.

We're kind of lucky. My husband's AS traits align fairly close with our daughter's, and he is able to help A LOT in dealing with behaviors, learning and communication that might otherwise leave me confused. He's a wonderful, very involved dad. Maybe your husband has some of the keys too. Sometimes things look more complicated than they are, so try not to overthink things.

Welcome to the boards! As anyone else around here - of course I have my own opinion.

Medication is something that should be considered on a case-by-case basis depending upon the needs of the child. My son IS on Lexapro (an antidepressant/anti anxiety drug), and I am so incredibly thankful for that. My son has fairly severe anxiety, and that medicine helps him cope. I started him on it when he was 7, and with careful monitoring - I can honestly say that it's changed his life. The only thing wrong with medicating or not medicating is to be closed minded about it either way.

It would seem to me that you would want to have a pediatrician for your son that is well-versed in ASD. All kids get sick from time to time, and in my case I like knowing that our pediatrician, while she isn't a specialist in ASD or anything - has a lot of experience with ASD patients in general. It's helped! You don't need a specialist for ASD, though. You may eventually find that a therapist or psychologist will help. In our case, my son is still fairly young (he's , so we haven't done that yet - but we're keeping that option open for the future if he needs it.

Mostly, we've just kept treating our son as always, except that now we know that all of those quirky things he's done over the years actually has a name!

Why are doctors constantly tacking on ADHD along with AS/HFA? The symptoms of ADHD are part of the autism diagnosis.

I truly think this is done to ensure medication use. If you research ASD's or even gifted children, you will find attentional issues.

Who, pray tell, prescribed the meds? This is the person who should be helping out, referring you to someone else! Did he/she simply prescribe and send you on your way?

Also, preseverating and other symptoms related to AS are part of it. Compliance? Not good enough. A child should never be medicated in order to gain compliance. The trade off is way too high in terms of the danger and unknown long term studies associated with these heavy drugs.

I agree with some other posters, that a diagnosis of AS is not a golden ticket into the world of medications. It seems to be the case--way too frequently.

The diagnosis provides services. After all, if it's neurological, your child thinks and behaves differently and should be accomoodated. He should be giiven more processing time, more tolerance for quirky behaviors, more interventions for social issues. The medication, then, is not necessary if your son is accomodated and tolerated for who he is minus medication.

I'm sorry--but, I'm getting tired of reading about kids on cocktails of medications. It's frightening and, I feel, way too risky.

Thanks everyone for the posts-- Keep 'em coming!! They are a huge help. I don't even know where to begin-- The meds seem to be the major taboo subject here. I totally see both sides of the issue, but they have been WONDERFUL for my son. He is such a sweet boy-- to see him absolutely so out of control with anger is heart-breaking. At the same time, prior to his other symptoms and any type of diagnosis, his outbursts infuriated me! I felt something wasn't quite right from the raging explosions that would occur anytime he even nicely was told "no, no, sweetie" at 9 months of age. At the time I was married to someone who was a strict and strong disciplinarian, so his answer was always to physically make him toe the line. Now that I have an answer for his behavior, and a new and wonderful husband, I am looking for direction-- You Guys here are great!! I may not be posting as much as I should, but I am reading.

Consider nutrition. Our pediatrician is a wonderful woman who prefers to go the nutrition route rather than the meds route. We are on a strict gluten-free/casein-free diet (it sounds hard before you start it, but once you get going it's really not that bad), which I think makes a difference for my 6yo Aspie son. (And yes, I said WE are on the diet -- it doesn't seem fair to only make him do it, so we're all doing it.) We've had various tests done (urine, hair, he freaked out twice with the blood test so that hasn't been done), and a urine test revealed that he's not digesting gluten properly. All this undigested gluten can act as a toxin and affect behavior. We're also giving him vitamins & minerals formulated for kiddos on the spectrum -- heavy on the B vitamins & magnesium, which can be calming, and a bunch of other good stuff. There's a host of other nutritional supplements we're giving to him, and sometimes it seems like a lot, but it just fits into the routine. There was a point last week when he decided he didn't like taking his vitamins, and we just couldn't get them down him, and sure enough, the last half of last week wasn't so good at school. We've managed to get the vitamins down him again since last weekend, and he had a pretty darn good week this week. So I think nutrition is HUGE with these kids. Just my two, possibly three, cents worth.

Hello FullHouse and welcome to WP!

I have 3 sons - 9, 7 and 4 years old. The first two have been diagnosed with AS and I have my suspicions about the youngest but won't bother getting him diagnosed until just before he starts school.

Every person with AS is an individual, there is no 'recipe' treatment. My 3 boys are so different to each other and different things work for them.

As the Mum, you know your child better than anyone else.

My advice: read up as much as possible - it won't take you long to know more about AS than many Paediatricians and Psychiatrists know. It's only been an official diagnosis for approximately 15 years and the medical community can be incredibly slow in learning. (I'm a health professional - this is unfortunately often true).

The first Paediatrician we took our son to was an idiot - her suggested management plan included getting my son to change schools and putting him on Zoloft.

Luckily I'd read enough to know this was not the best plan. I sacked the Paediatrician.

We took our sons to an autism/asperger's clinic. We are lucky to live in Brisbane, Australia which has the world's best autism/asperger's clinic (no I'm not biased - just stating fact).

The psychologist there is absolutely fantastic. She recommended an 'Asperger-friendly' Paediatrician. The new Paediatrician is fantastic. He is semi-retired and only sees patients 1/week. He then flies around the world educating other Paediatricians about Asperger's.

After 4 months of intenstive Psychology sessions, changes to our household, reducing the boys from 5 days/week at school to 4 days/week at school and an IEP at school the boys are doing well.

Get in contact with your local Autism society. You could ask them to advise on Paediatricians or Psychologists who know a lot about AS.

Re medications. My husband and I saw medications as an absolute last resort. With the strategies we have put in place we don't need them.

I'm not judging your decision - you're the Mum and you know best for your child.

I recommend you go to Tony Attwood and Carol Gray's websites (sorry I'm on my Mum's computer and so can't get you the link - will do that when I get home).

There is a 13/14 year old on this website who posts as Squier (I think) - his real name is Quinn. Anway, Inventor kindly posted us his book and we loved it!

Quinn recommended martial arts. So we all started Taekwondo. The boys love it! Previously they'd played soccer but hated it because of their poor coordination and being teased by other kids on the team. Taekwondo is an individual sport, plus there is an absolute focus on higher belts helping others to learn.

Regards
Helen

P.S. Click on the link in my signature - this is information from a Tony Attwood seminar I attended

The statement about the diagnosis providing services is really not the absolute truth. Case in point - my son. He has been diagnosed AND had a second opinion done for his Aspergers diagnosis, and yet the only real "services" my son receives at this point are the ones his father and I pay for privately, which anyone can get - formal diagnosis or not! Although he may have aspergers and definitely has his quirks, they aren't to the degree where it interferes with his education - so the only REAL thing a diagnosis does is give a name to the list of behaviors and symptoms that a parent has seen in their child.