Advice/Reflections - ASD official diagnosis is it important?

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I am a mother of a 5yo son who is nearly 6 in July. He has not been officially diagnosed with ASD although it has been suggested by many people who has interacted with him (professionals & support staff to him) that he is ASD. In my research I would have to say he is would fit an Aspergers profile on the ASD scale.

Dilemma -- I would like him to be officially diagnosed but my husband does not. I understand his position, he is not in denial as we can and have provided everything financially for therapy over the past year since we decided he did not fit the norm so to speak; speech therapy, OT, psychology, behavioural, neuropathy, biomedical (diet, supplements) etc.. Basically we are treating him like he was diagnosed with ASD and throwing the entire book of research at him along with mainstream treatments on advice that comes from ASD experts. Basically we are privately funding his treatment with specialists advice. Yes, he is improving but this year is his first year of school (since Feb) has been a roller coaster ride that is making me wonder if we should or shouldn't officially diagnose him.

He just started school this year and attends a private normal school. They are about to kick him out if we don't provide self funding for a behavioural specialist to transition him with the school cause of his 'odd behaviours & meltdowns'. My son loves this school and is fixated that this is the school for him, made friends (or just knows their names) & feels comfortable around them, so I have agreed to more funding to assist but can't help but wonder if we are trying to force a square peg into a round hole and prolonging my sons real future into a better suited environment. If we get him diagnosed we have access to a special AS school (btw this week at this normal school he has spent only 1 day out of 3 days at school cause either the school has called me to take him home (melt down) or told him not to come in cause the aide called absent).

My husband who is a great father spends countless amounts of hours trying to correct my son's behaviours and believes that because a reported 10-20% of ASD diagnoses are cured that we should not label him if we can afford to fund his treatment. Seems to think 'who knows what this label will do to his future once he can manage it or is cured?'

Me I don't mind if he isn't cured I love him and support him no matter his quirks but I just want him to be happy and to be prepared to understand and teach him to understand if his quirks don't change or can be controlled. I am worried he maybe a victim to bullying in a normal school along with self-worth degradation if he does not completely understand his official diagnose why he is not like the 'norm'. Also others who has to support his growth & development seem to need a label to work with him.

This is my first real post to the world on this matter, it's hard to discuss for me. I would just like to hear from others parents and people who have had to live with this condition given both scenarios is diagnosing really that important?

Well I will warn you first off that you are likely to get some blow back for using that word, "cure" here. I'm not sure where there has been a reported 10 - 20% of cases that are cured. Yes, absolutely, I think kids that are less profoundly effected can be taught coping skills and social skills and can learn to function in society at whatever level they choose to but they will always have autism, there is no cure.

There have been several threads on this forum about the pros and cons of getting a formal diagnosis, I'd encourage you to search those out. One common theme about whether to diagnose or not, and the one that I personally ascribe to, is that you get whatever label you need from whomever you need it in order to get your child the services he or she needs to succeed. At first we pursued the evaluation through the public school system because we knew that is where our son would eventually be. We got the label from them that states that our son has "characteristics consistent with high functioning autism" and that those characteristics effect him to a degree that he is eligible to receive services and accomodations through the school system. The school system professionals don't "diagnose", they just determine if a child meets the criteria for needing services. Later we found out that the OT our son was receiving was not going to be covered by insurance because of the "label" his pediatrician used when she prescribed the treatment. I didn't hesitate to ask her to change the diagnostic code to include the autism label so that we could receive benefits for that therapy. We probably could have afforded it without the insurance but that would have taken away from something else so it was best for us.

On a separate note, if you are throwing the book at him and not seeing much improvement, you might want to slow down a little bit. Professionals that I have read and who have worked directly with our son have advised us to work on one thing at a time. Let him master one thing then move on to the next.

Hi Butterflyrose,

I can share with you my experience, it will be a little bit different as I am in Canada, and my son is in the public school system. He is turning 9 in October. My husband and I also believe he has an ASD, although we had him screened at age 7 and they said no. Our pediatrician wants him re-screened, and we are currently on the waitlist for this (est. Jan 2012). We have also used interventions that would be typically used for a child with an ASD, and we have also paid out of pocket for two private assessments, and OT consultation, a social skills group and developmental optometry screening. School has always been a challenge for my son due to anxiety, sensory issues and the lack of basic social skills. He is just finishing grade three and the only support he gets at school is somewhat irregular meetings with a Youth Worker and even more irregular meetings with the school counselor. The school has been very reluctant to provide my son with TA support (which he desperately needs!) specifically because he does not have a formal diagnosis. It does not matter that each assessment we commissioned highlights his key deficit areas, it does not matter that anxiety has been mentioned as interfering with his learning process. He does not get the support because the school does not get the funding because he doesn't have a formal diagnosis. He has completely shut down at school, and it is sometimes a nightmare even getting him out the door in the morning. He HATES school.

Now, having said that, I have embraced my inner witch (perhaps substitute the first letter on that one), and fired off a very stern letter to the director of Special Education for our school district telling them basically that they MUST provide my son with support next year. They have let him fall through the cracks enough - I mean FOUR years! It is completely obvious that what they have done thus far has not benefited my child. She did call me back right away and said that she would do what she could to get funding, even if it means a temporary designation until we get a formal one. My son needs the help, desperately!

Now, our husbands. I too found that the diagnosis for a long time wasn't really on my hubby's radar screen. We always seemed to manage at home somewhat. And I think he truly believed our son would "grow out of it". I think though, after the nightmare I call our last two years in the school system has sealed the deal for him. In grade two, our son was considered a nasty behavior problem that needed to be punished with trips to the office, not once understanding that he NEEDED help. Believe me, when you KNOW your child struggles in certain areas and you get TOLD your child is just being naughty, and if you just provided more consequences at home, well...it kind of grinds you down. I remember being told by the school counselor that it was likely my son would even get suspended at some point (grade 2!) but it was okay because he's just learning. Seriously! It took a whole year to get the school to recognize that there was more to my kid than him being a pain in their butt.

So, short answer, you can go through it without getting the dx and continue doing all you can for your son and know you are doing your best. But the lack of a dx can lead to misinterpretation and misunderstanding of what is happening for your son at the school level, and believe me, one day you WILL get the teacher like the one we had last year that will destroy your son's self esteem and make him feel like a failure. If the meltdowns are happening now and they are having you pick your son up from school more than once a week, this means they do not know how to work with him.

I hope the view from my side of the fence has been helpful. I'm sorry it's not a better one, but it's the one we've lived

cutiecrystalmom

Here are links to a couple of threads on this topic with some good discussion

http://www.wrongplanet.net/postt148438.html

http://www.wrongplanet.net/postt139801.html

Since there is no general rule I will limit myself to describe our decision to stir away from the diagnosis. First and the most my son (6) did receive bunch of services for 2+ years of preK with people that know how to work with AS kids and it didn't help him a bit (maybe speech only) even set him back . He immediately improved after cutting back the special preK (he split time between regular day care and special one). He has behavioral problems in school but not the academic ones and the problems are not severe (well that depends on whom do you ask probably). He "looks" very autistic however lots of this runs in the family and we recognize it as an asset since both families are reasonably adjusted, employed and happy.
He has problems in school and we do address it problem by problem without the involvement of diagnosis. DX actaully complicates the problems for us because people do assume a standard autistic behavior and he is not. Teachers constantly presume that he is upset by the changes and that he can read but does not understand, needs visual aid and similar and actually he is not that way. All of those are the norm for AS but kids differ. These presumptions are very much hindering and it seems to me that the teachers and professionals are also trying to fit my square son into AS round hole too.
My only suggestion is to avoid to be scared by the professionals and teachers into going into wrong direction. Trust your instincts and observations.

So glad to hear that you have identified and provided the interventions your son needs. Transitioning to school can be a difficult process. Your son will be spending 8 hours a day in this environment - among people that do not sound as if they have the skills, training or patience to handle a kid on the spectrum. When it comes to school age children, the dx and resulting IEP process legally protects your sons rights to the least restrictive educational environment while still providing for his needs.

You son sounds as if he has had ALOT of intervention. Some of those skills need to worked on continuously for them to be maintained. It is not the case where he can learn them and that's it - they are learned, end of story. Without continual reinforcement he could possibly regress in what he has already learned. Essentially, he is on his own at school. Many AS kids, while extremely bright, are also a year or more behind in maturity compared to their peers. My daughter is about 3 years behind in maturity - at 9 she is more like a 6 year old in her emotional and social maturity. If this holds true for your son, I think you can see where more, unanticipated problems could occur.

I do not know the full nature of all the interventions you have provided but, like previous posters, I agree that it sounds like the schedule has been quite aggressive. If your son does have AS or another type of ASD you cannot train it away. It cannot be cured. It is part of his personality and will be for life. My husband and his family were very much the same way when I was seeking answers for my daughter. At times they were outright aggressive. My husbands strategy was to ride my daughter harder in the things she had trouble with. He was, at times, desperate to make her 'normal'. While my daughter had been receiving therapy since she was 3 1/2 it was only under a general assumption of PDD-NOS. She was only officially dx'd this past January. And, with that dx, her IEP changed quite a bit. All the things I knew I saw in her, the school downplayed and dismissed as over protective mother syndrome. Now, they cannot deny it.

We happen to be in a fairly good school district when it comes to special ed services. As much as your son might love that private school, if they are incapable or unwilling to provide the educational support your son needs, you may need to look into another choice.

For us, the official dx was a time of relief for me, and a time of mourning and acceptance for my husband. He is still resistant to learning what the specifics are in AS but, at least now, he cannot deny that the problems exist - and always will. Kids with AS and ASD can learn! It isn't some sort of life sentence you are imposing on your son. If it is treated that way, that is the way he will feel about himself and his future. If it is approached as 'hey, you're different, this is why and so what?!" and just get on with living, his self esteem will definitely benefit from it. So, he has autism. So, he needs help learning. He may never want to play baseball but he may grow up to be an engineer. whether he has a dx or not, his difficulties will always be there. As an adult, it will be his choice if he chooses to disclose his dx or not. I would recommend the DX just because it may help your family move forward rather than constantly battling something that is an integral part of your son.

There is a free book written by our own WP member,Tracker - "Congratulations! Your Kid is Strange!". It would be a wonderful book for your husband to read. I realise I do not know him but from what you have described, it sounds as if you are in the same boat I was. It sounds like he needs to find that place of acceptance. Tracker's book is a good place to start.

Congratulations! Your Kid Is Strange!

Whatever it is you are going through I can guarantee you that there is someone here that has already been there and done that. You don't have blaze your own trails all alone - let someone here help guide you! Good luck in this pivotal time. Hang tough, mom!

Hi I've just started reading Freaks, Geeks and, Aspergers. What a great book, written by a 13 year old with an AS diagnoses. If you can get your hands on it, perhaps you and your hubby could have a read.


On another note, I'm curious I'm in Australia so things may work differently over here.
If you get a private diagnosis, if you don't want to pass that information on to anyone else, school included I didn't think you had to. However at least having the diagnosis will help you guys better understand your child and support him. If he is having problems at school, with a dx you could then offer advice to the school as to what may work, without actually giving them a label.
This child in a few years time may be feeling very lost and betrayed by all (parents included) if he finds out that you guys had the power and possibly the tools to help him and you never did.
This is all my own opinion, I'm not trying to judge or condemn anyone. My son by age 7 was making noises that there was something wrong with him, by age 8 he was agreeing with kids at school, "he was a freak, crazy, stupid" etc. My son is not a freak, nor is he crazy or stupid.
He is interesting, he is gifted in a lot of areas and he needs extra help to conform. My son is 12 now he got his dx at 8 he was told immediately, and it was such an anti climax. He already knew he was different he just didn't know that there was a name for it or that there were lots of other people just like him out in the world. My son is proud to say he is an Aspie. The label has also given him a much better understanding of himself.

My oldest son (21 years) went threw life right up until just weeks ago, thinking he was stupid, being dismissed by others as slow and having a low iq. as a parent I put every thing I could into my oldest, at home I knew he was bright and happy and talkative, but apparently outside of his safe place it's a different story. Since getting the dx for my oldest I have noticed a new confidence and acceptance of himself. He isn't hiding away as much as he used to, he is offering his own opinion more, the benefits have been fantastic. He is still no where near as self confidant as my 12 year old but he is much happier.

For me the benefits of a formal diagnoses far out weigh not having one, I personally believe it is the child's right to have as much information about them selves as a parent can provide.

Any way the choice is yours and your hubby's to make, this is all just my personal opinion I know others on the board feel differently and that's ok to. Good luck with it all.
Welcome to wrong planet.

Ooooops Hope I deleted this second post right.

I accidentally posted the same response twice. sorry

i am always a bit confused on the reluctance to get a diagnosis. if you suspected your child had diabetes, would you hesitate to get it diagnosed? if you think your child has cancer, do you ignore your instincts and not seek medical help? of course we dont ignore those things. but if its autism we suspect, then there are all these concerns about what this diagnosis will mean in the future, and we do it because of the stigma that surrounds neurological/mental health issues like autism. WE, as parents, are perpetuating the stigma our children face when we refuse diagnosis because of it.

many families can get by without a diagnosis. if it works for them, then it works, and keep doing what works. but if your child is having problems in school, if he is in danger of being kicked out, if he is having major issues every week that keep him out of school.... then what you are doing is NOT working, and things need to change. maybe that starts with a formal diagnosis, maybe that starts with a change of school. but keeping the status quo shouldnt be an option at this point.

i am a big proponent of self awareness, so i always come down on the "get the diagnosis" side of the fence, if my actual opinion is asked. if for no other reason than to understand yourself, it helps to have that official diagnosis (as long as its done by a competent professional who gets the dx right). in our family's case, the decision to get a diagnosis for our 5 yo led to diagnoses for our 14 yr old and my SO as well. the diagnoses have been hugely positive for our entire family, not just those diagnosed, but those of us who live with them as well.

as for a cure.... there is no cure for autism. it doesnt exist, there are no 10-20% of cases "cured". many kids do progress and develop, but thats nature, not a cure. the treatments for asd are to help autistics function better in the world and understand it, not to cure them.

I'm currently pushing for a diagnosis. I feel certain that my daughter has aspergers. My reasons are that others expectations are currently beyond what my child is able to do. With a diagnosis others have to adjust their expectations of my child and handle her according to her needs. This includes her Dad, the staff where she will have a few weeks of day camp this summer and drs for her arthritis and diabetes, as well as her caregiver during the day.

As it is now, people just think I have a rude spoiled overindulged child. And without a dx it is hard to argue when I am calmly letting her know her tone is inappropriate after she yelled at me in a store or when I just take a deep breath and smile apologetically after she was rude and unpleasant to a nurse who said good morning.. etc...

Her Dad thinks this is a discipline issue. Not very fair to her if she has aspergers to discipline her for stuff she cant help.

And lastly because right now horrible behavior in my house is often being overlooked bc I do not feel comfortable giving consequences without knowing for sure what she is or is not able to control / understand, etc. So basically when I say no I stick to no but I am just grinning and bearing the storm after that. And when she is miserable and miserable to be around and rude or glaring at me, etc etc etc.. I have no options. I need a diagnosis bc I need a direction. I need to understand what is going on with her to help her.

I think it's great that you are doing as much as you are without the diagnosis but please consider that others who deal with your child on a daily basis may feel like I do with my child. No clear understanding of the childs level of understanding and no clear direction on how to help the child. A diagnosis will help with that.

Thank you to everyone for your insights, I think the hardest thing for me is going it alone on our 'self funding' journey. It has been very insightful reading everyone's reply along with the other links provided. If even more, it has opened a conversation with my husband as to the 'fores and against' based upon other people's experiences in this matter.

I live in Australia we seem to be a little different to some of the things discussed. We have access to a government grant for medical treatment outside the school system if we diagnose before he turns 6 yrs. It's quite an incentive to get this funding of 12K (6K per year over 2 yrs) and free 20 visits OT or speech therapy per yr until they are 15 yrs of age. I am sure there are other things but these are the ones that mattered to me given my son needs.

If we went public schooling then they provide a 30K grant to the school for his special needs. But in light of this the costs will still be more than the government can provide, it just helps. I think after listening to want you guys wrote I can understand this decision is a very different one for you, you get less assistance if you don't conform to the system. It's a shame they leave the real decisions in the hands of the people who really don't know your child's needs.

Fondly enough I spoke to someone today in the same school, same level who did diagnose their son with ASD. I really did not get into specifics but her fights seemed heighten that she actually gave the label to her son. She actually told me she ripped up the first report to get another option not that she was in denial she just did not agree. I think in some ways in the private system you get little rewards for the label. The school only gets 3K unlike the public system to aide your child, then it seems they use that against you for further independent input. She was at a kids party who someone said 'oh we have 2 autistic kids in prep', which she responded yes I am one of them. Funny isn't it how society talks without regard to what ASD really is or means.

The testing here seems to force the label as non specific so if I was to diagnose formally then no scale would be given so to allow our options to be open. Here we have an open policy for high end ASD, so if you have low functioning disorder you have access to fully funded schools in the public system but if you are in the high end your kids can't access special ed public schools they get thrown into the normal school system it's up to you to sort out how to make it work. I suppose really the government does not see this as a true disability, maybe good cause I would hate my son to be refused into the normal system given he is 99% percentile on the performance scale. I want him to get the best education he can manage.

Yes the school seems to be not coping. I will throw more funding to assist with an close eyes on my son to make sure this is right for him in the long turn. Both my husband and I have said at anytime this is not working we will pull him out and do whatever we need to do to make it work 'for him'.

It's a hard choice, to label and so many forms we fill out as adults asks if you have been diagnosed with mental disabilities. They don't ask if what so much they classify based upon this naming without any question. We will provided privately the same if not more than the formal diagnosis will provide and will formalise it if we need to in future but after reading everything I have read I understand the problems associated with formalising his special capabilities. We will not get hung up on titles, let's work towards a solution, maybe this is a dream and you will hear me vent more later but I live in hope. Then when he is older I will explain to him unbiased the decision and let him decide himself. At 5 yrs right now even though he can solve the rubix cube (was never able to do that myself!) he cannot make that decision so we need to be respectful if we can afford the intervention without the label. We understand him too well we live it everyday. A title will do nothing for us to assist in this.

I appreciate everyone's response. I find this hard to talk about this because I feel I am always protecting my son from the world. Here I feel like I have trusted friends. I hope to help you with any problems and support along the way like you have given to me.

nb sorry for the comment on the cure, I used the wrong word it is recovery. I don't advocate that this is true but recent research shows a 10% figure look up 'Study suggests kids can ‘recover’ from autism' Fein’s study. I spoke further with my husband on this to make sure he was not in denial. He too believes his problems won't disappear, but hopes we can manage them given an environment. We are both computer programmers I suppose so we look at the mind the same. We just need to train it for the experience. Not so harsh as it sounds but I do believe my son learns well on cues we have already proved that he does and seems to work so far (& lol I think my son's AS has come from both his parents).

my son is 5 also, and going back to the self awareness issue, i think sometimes we underestimate how much they notice about the differences between themselves and other children. my son is incredibly insightful for his age, and things he has said to us have led us to discuss autism with him already. he knows he is autistic and that it makes him different. he has made comments about things he does that are very typical asd traits, and we talk about those things with him so he has an understanding of why they happen. i dont think many parents typically sit down and discuss such serious subjects with their 5 yr old, but then my son isnt typical so the usual parenting doesnt apply.

in our house, the word autism isnt used as a label. its a diagnosis, or even a state of being. sometimes its the entire tone of the day. it governs all interactions with and reactions to the world. but never just a label.

its also interesting to note that you dont often hear autistics talking about it being a label. i think most of them tend to see it as something much more, as a major portion of who they are. its schools and parents and doctors who call it a label.

Yes, we are already discussing how special he is and his limitations with our son. No, we have not told him his is autistic because the school has already used this against us for politics. Really what does it matter it's a term we can call it 'scooby doo', but he is 5 yrs above average mentality but not emotionally I don't think we should place the world upon his shoulders right now given our battle with the school. Please don't be hung up on terms or the way I use them, we are fighting the same battle just in different circumstances.

AS...or ASD, is not something that can be "cured". Those with AS or ASD who were "cured" were either mis-diagnosed or have learned some coping skills that allow them to present as an NT, but in reality, are not NT.

Unfortunately I believe mis-diagnosis has become epidemic. Children are are just late bloomers, two year old with odd little quarks they eventually grow out of, and little boys who are difficult and may have other issues are being labeled as having AS or ASD just because it's on everyone's mind, like ADHD was in the 90's.

Of those who do have ASD or AS who seem to have grown out of it, this concept underlines the fact that the NT perceives the world through superficial means. If it looks like x, and acts like x, it must be x. There is a point when many people with AS or ASD come to realize this. They first realize they are different. Later, they analyze how they are different....at this point they typically acquire good social comprehension skills through logical analysis of social situations. Through this, they discover the previously hidden rules of social interactions and realize if they follow these rules, they don't stand out.

This might become second nature in a sense, however the underlying neurological processes they originally possessed are still their. Their brain still proceeds to process information and interpret the world a little differently than others.

Due to your son's difficulties with school, you may be forced into getting him an official diagnosis.

Whether you do obtain one or not, what is important is that when your son comes to you saying he is different (because he will eventually realize he is) you tell him that yes, he is different. It is also important that you explicitly teach him social skills that other children simply acquire. You need to teach him flexibility and you need to encourage him to interact with others in social situations, and you need to do with without stressing him.

Chronos, I couldn't agree with you more. Mis-diagnosis is so common it is hard find someone who can measure ASD correctly with such a subjective test using the DSM IV to assess. Really one could easily be classified. Of interest I heard a Korean study places 1:38 on the ASD scale, whether they are under-diagnosing or mis-diagnosing or do we have an epidemic on our hands, regardless society methods of teaching the so called norm needs to make allowances for differences.

No, I don't believe in a cure but I do believe we as can train the brain to learn ques. In saying this an AS person who posted but deleted their post I read I understand that training out the things that makes you survive is something not to do. I understand. It's not for me to change my son and all that God has given to him. I am so proud of him and would not change him even his differences. I feel my role is to support him and to fight his battles along with providing him the ques he needs to maintain security in life. Social ques seems to be the most important and we are working on these as parents.

Really idk if parents or the school says 'oh he is different' hell yes his IQ is higher than yours given his age. How much information he processes. His mind works overtime, he processes and hold so much information that we regard as rubbish, he has not learnt or maybe never will to discard information. I can give him my shopping list no matter how many items and he remembers.

As a parent it's hard and I have read so many stories on 'our' perspective. I have also read stories on the people who are diagnosed with AS. I think it's a fine line parents want the best for their child, child wants to grow to be themselves. We may never get it right but we try.